​The most important information I could share with all you tonight is about Tanner’s CURE. 
We have participated in every trial out there for CDKL5.  We’ve tried every CBD oil and pharmaceutical med offered, but one of Tanners diagnosis’s is Intractable Epilepsy.  Not just epilepsy, but Intractable.  That means medication will not help. He will seize no matter what. Some kids see honeymoon periods, but no CDKL5 child is seizure free. I’ve said for about 6 years now, at least, that Tanners only shot at a better life is a cure. A genetic therapy. We will keep researching meds, but as of right now, I believe this is as good as it gets for Tanner.
We attended the CDKL5 convention this year. it was the first time it has been held in person since 2018. This is an opportunity for us to hear directly from specialists mouths, what is going on, what’s been done and where are we going.
We had the opportunity to meet Tracy Durgin while there and she’s here tonight. Tracy is the Director of Medical Science Liaisons for Marinus Pharmaceuticals.  Marinus is a huge supporter of the IFCR and managed the trial of Ganaxalone. 1 of the 5 trials that have been made available for our kids…all 5 of which Tanner has participated in, with the final and newest one being the only one that has truly made a difference! But many kids are showing improvements on all of them.
5 trials in the past 6 years, for a disorder no ones ever heard of and as of Tanner’s diagnosis in 2014, less than 1000 patients even existed!  That’s remarkable!
But nonetheless, a cure is the only path forward.
We also heard about the genetic trials, which we originally thought would be ready by this year. I sat down with a representative of Ultragenex. That’s the pharmaceutical company, as far as I know, closest to finding our cure.  In their speeches, they all seemed to dance around the answers to what most of our questions would be, but you all know me pretty well.  I needed a one on one, so I got it. I asked some very blunt questions, although I already had a good idea of the answers, I needed confirmation.
When this gets to human trial, in phase 1, will it only be open for girls? The answer is likely yes.  with only 1-% of patients being male, they need a broader audience and a higher success rate. That part is me talking, not them.
What is the timeline of events as we stand right now? we need more animal testing to get dosing correct, which puts us another 6-12 months out. Then FDA approval.  So likely a few years in total.
I left feeling pretty heartbroken, but always thankful for the truth. I can’t fight for Tanner without the realistic truth. Bottom line, results so far from animal tests of the genetic therapy have been positive.  The Rett Foundation is currently in clinical trials on kids and showing positive results!  But there have bene some genetic therapy trials where kids have died and I don’t know the details surrounding those, but obviously no one wants to take that chance. So they are crossing all T’s and dotting all I’s.
If I’ve learned anything from Tanner and CDKL5, it’s that I just can’t control everything.  And I can’t control this. 9 CDKL5 kids have died since this time last year.  9. Some of the kids on our banner by the door are no longer alive. I’m just keeping it real. But guess what? I am a fighter.  Brian is a fighter. Tanner is the biggest fighter I know! he’s going to fight this and survive until his cure comes.  My boss told our sales team one time that whoever is up against Courtney doesn’t’ have a fighting chance.  I’ve never lost a competition I put my mind to and I’ll do whatever it takes to get Tanner the cure he deserves!
Please know that your money and support are making a difference.  Now, when families hear the words, “your child has CDKL5”, it is backed with:
                It’s one of the most common causes of Epilepsy.
                There are several clinical trials your child may be able to join.
                There is much research going on and disease modifying treatments in development.
                Real progress leads to real hope.
                There are tens of thousands of patients in the world.
                Real progress requires our community to remain engaged.
When Tanner was diagnosed we were told by doctors that they didn’t know much, this must be terrible news, I’m so sorry and don’t google it.
Wow!!  What a difference 10 years has made and that’s all thanks to each and every one of you! Spread awareness!  Talk about Tanner. Talk about CDKL5.  Donate and help raise money.  If we all continue to do that, Tanner will get his cure!  I know it!
Thank You!

15 different seizure medicines, a very strict ketogenic diet, 9 CBD oils, a complete holistic supplement path, 2 steroids, 2 spinal taps, 2 MRI’s, many sedations, more EEG’s than I can count, probably a million needle pricks and pints of blood and well over 40,000 seizures!  A diagnosis of epilepsy.  A diagnosis of CDKL5. A diagnosis of Infantile Spasms, a diagnosis of CVI (which by definition is legally blind), a movement disorder called chorea and a diagnosis of Global Developmental Delay.  3 ambulance rides, 3 rescue meds which have now been given multiple times, a central line drilled into his shin bone at 9 months old.  A swallow study showing aspiration, meaning liquid is being swallowed incorrectly and going into his lungs, which if not corrected, could cause pneumonia, organ failure and worst-case scenario, lead to death.  8 different types of seizures, currently still having at least 3 of those today. A surgery called VNS where a medical device was implanted just below the skin in his chest and connected to the Vagus Nerve going into his brain.  Covid, Flu, RSV and Rhinovirus.
Tanner has been thru more in his lifetime than most of us in this room will ever go thru, and he’s only 8 years old.
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Have you ever wondered what your purpose here on earth is?  I know this is gonna get deep for a minute but seriously, most of us live life and never really know our specific purpose.  We have fun, go to school, get married, have kids, work, raise our kids, make friends, work harder, get older…you get the picture.  Growing up, I was always outspoken, loud, strong willed and boisterous.  In high school, I got into 2 physical fights.  The only 2 I’ve been in in my life and they were both defending my best friend (who’s here tonight but I won’t mention her by name…Brooke). She was too sweet to tell a mean girl to back off but sweet had nothing to do with it in my eyes.  Someone was mistreating my friend so I stepped in.  In college, my best friend referred to me as “her voice” because that’s what I was for her when needed.  I tell you all of this because I never wondered why I had the personality I had growing up…but now I know why.  God’s intention was to give me Tanner all along and he knew Tanner needed a strong, outspoken voice to speak for him.  To fight for him!  I was simply given 35 years of practice!  I fight for medicines, for procedures, for therapies, for insurance coverage, for seating and mobility needs, for inclusion, for awareness, for funding, for an elevator!…and now, we are fighting for a cure!  My purpose in life is to save Tanner’s life and together, with Brian, I think we’ve already done that. Who knows how he would have been taken care of if given to other parents.  Tanner is who he is and as healthy as he is because of us and when I speak to other newly diagnosed families who are just starting their journey with CDKL5, they ask me the how’s and why’s.  The same questions I asked!  But I can still remember exactly what it felt like when I got the diagnosis and 8 years later, my advice to those families is the comfort of knowing that I’m fulfilling my purpose in life.  And in time, they will to.  It’s such a privilege to be Tanner’s parents and to be able to love him and learn from him. We are all making a difference!
Moving forward, although I think it’s important to tell Tanner’s story and to keep sharing his life with the world, I’m going to spend these moments at Toasting Tanner sharing updates on the Genetic Therapy currently underway, that we believe will one day be Tanner’s CURE!  I’m going to consistently put the positive vibe out there into the universe that a CURE is coming.  I’m not sure if everyone knows what “Genetic Therapy” means but I’m gonna tell you.  A lot of people fundraise for great causes and raise money for organizations to help find a cure but I’ve always wondered what part of the population actually believes a cure is possible or are they just donating money because it’s a nice thing to do.  In our case, I think it’s probably a little of both, but my goal is to educate you on what is coming and get you to believe that this is not just some pipe dream.  It’s coming and all of you are going to be a part of it!
The Loulou Foundation partnered with the IFCR in 2015 with a goal of “treatments in 5 years” and “cures in 10 years”.  Here we are in 2022 with 3 very successful anti-epileptic treatments, specifically for CDD and a cure looking very promising.  If you follow us on social media and have seen the pictures and posts we’ve put up recently with all of Tanner’s smiles, that is due to one of these 3 drugs that is miraculously working for Tanner! The length of time each seizure lasts has been cut in half and the amount of seizures in a day have decreased by about 25%. Because of this, little bits of personality and happiness has started to come out.  He plays with us, he interacts purposefully and he smiles.
Although this is fantastic news, the best we’ve seen in 8 years, I’ve always said this and will say it again, Tanner may show some improvements with medication but my belief, faith and prayers are that a genetic therapy is made available soon, while Tanner is still alive and healthy because that’s his only real hope.   A company called Ultragenyx and others are currently working on the gene therapy we are waiting on which is basically a single injection, into the Cerebral Spinal Fluid, to supply a functioning copy of the CDKL5 protein.  As of right now, it is believed that this injection will be a 1 and done and cannot be repeated.  What does that mean?  That if it works, that’s great, but if Tanner is able to get into the trial and for some reason the trial doesn’t work, he’s done.  So very scary and lots to consider.  There’s a lot of positive here though.  this is a 7 phase process before we are at the FDA approved, commercial form for everyone, and we are already in phase 3.  The therapy given to mice models has lead to improvements across several different functional domains, such as Motor function, learning and memory.  They now need to evaluate in larger animal brains. So, what can we do to help this process?  The IFCR has started a 1 in 200 campaign.  They are asking that at least 200 kids be seen before the end of the year, in one of the Centers of Excellence.  This will help them understand standard measure of care across multiple kids where the disorder presents itself so differently.  So Tanner and I, with the help of my Mother-in-law, will be flying to Boston in a couple weeks to be seen by multiple specialists for CDKL5, at Boston Children’s Hospital.  I want to end it there on a high note and say that your money is not going towards a pipe dream.  It’s going to a potential miracle for our son.  

​Hi!  We are doing things a little different this year.  I’ve never done a live feed before so bare with me.  For those watching who don’t know our story well, we typically host a Live fundraiser each year to raise money for our son’s Foundation but it was cancelled this year due to Covid.  I didn’t want to cancel everything though so we still have an online auction going on right now that closes at 10pm and I wanted to give some information that I would normally give at the event.  This is Tanner.  He’s 6 years old and have CDKL5 or CDD (cdkl5 deficiency disorder).  He cannot walk or talk or use his hands.  he is visually impaired as well making it virtually impossible for him to communicate to us.  although he used to eat by mouth, he’s now lost the muscle to even swallow so he eats via a G-tube.  He has daily seizures that we have never been able to control and in the past couple of years has had more GI and respiratory issues than before. 
I think it’s important to share where your money is going if you choose to donate so that’s part of what I wanted to focus on tonight.  The CDKL5 Foundation is making some amazing strides towards finding our kids a cure and I’d like to give you some details on that.
There’s a research foundation that has partnered with the IFCR called the LouLou Foundation.  When they first started in 2015, their goal was “treatments in 5 years” and “cures in 10 years”. Here we are in 2020 with 3 anti-epileptic treatments specifically for CDD and a cure looking very promising.  Possible clinical trials for those cures in maybe 2 years!
To better explain:
The 3 anti-epileptic treatments are:

1. Ganaxalone – the 1st physical trial for CDD and the 1st drug approved specifically for the treatments of CDD. Tanner was on this trial but unfortunately it did not help him.
2. TAK-935 – currently in phase 2.  12 CDKL5 patients are on this trial, Tanner being one of them.  If they get positive feedback, it’ll move to phase 3. Unfortunately, this isn’t working for Tanner either, but it is for some of them!
3. Fenfluramine – the FDA has approved this for treatments of seizures in Dravet Syndrome and there’s currently a pilot study for CDD at NYU. This is looking positive to advance.  We’d really like to get Tanner on this, and we were accepted to start at NYU but we can’t fly there as often as needed.  Especially now with Covid.  But if it advances, I’m hoping we will have the option to get on it here in GA.

 
Although those therapies are helping a lot of kids, they will not bring the cure we need.  They are simply anti-epileptic therapies.  We wish they would work for Tanner to control his seizures, but I’ve always believed his cure is gene therapy and that brings me to the next update.
I hope I state all of this correctly because it’s a bit over my head, but There’s currently 2 different labs and 2 different mice of 2 different ages (baby and juvenile), both with CDKL5.  They are currently also having seizures which was not happening before.  They each received 1 injection into the brain, which is the therapy, and both have improved motor, cognition and behavior. 
There are 2 approaches under development now, gene therapy, which is what I just described and enzyme replacement therapy.  There are also trials in place now for gene editing.
There is a very real possibility that this gene therapy could be in human trials in maybe 2 years, providing the possibility for a cure in 5 years.  And to be clear, we are very realistic people.  A cure does not mean that Tanner will suddenly be like you and I. But what if he were able to use his hands or to see, so he could communicate to us?  what if his seizures went away?  How amazing would just that be?  that would be a miracle and all of YOU can be a part of that miracle!
Earlier this year, we and the whole CDKL5 community lost someone we truly loved and felt very connected to.  a little girl named Sonya, or Sonzee Bear, passed away.  Her little body just couldn’t take any more.  Her mom wrote her a letter specifically for me to share with you tonight.
Dear Sonzee,
You were born one year and 9 days after one of your CDKL5 brother’s whose name is Tanner.  Our paths with his family wouldn’t initially cross until 2.5 months later when his mother and I were both part of the CDKL5 parent support page on Facebook.  There were so few babies/one-year old’s diagnosed at that time, it was really hard to relate to many of the other parents.  You and Tanner seemed to always be on par with one another, and I used him as a “guide” if you will, to know what might be on the horizon for you.  You sadly never got to meet Tanner himself, but his mother has visited Phoenix twice and our bond will be permanent.  When she reached out to me to ask if I was willing to write you a letter for her to read during her annual Toast for Tanner, I didn’t even hesitate, because, while my hope for a cure for you left with your body this past February 3, I still have hope that she won’t have to experience the same fate for Tanner.
 
Unbeknownst to us, our journey to friendship with Tanner and his family initially began with our sleepless days and nights in the NICU which then transitioned into questionable shakes and startles that we learned were seizures, and shifted into the beginning of the initial nightmare, that we have all now come to know as CDKL5 Deficiency Disorder.  The day we received that diagnosis was the very first day we would begin to grieve.  We grieved over the potential that we knew deep down was ripped away, we mourned over the you we had initially anticipated, we feared over the course your life would take, but ultimately…ultimately we continued to love on you as if you were no different than your three older siblings.  Life however as we had known it prior to your birth would never be the same.  It became filled with seizure tracking, round the clock medications, intensive therapy sessions, multiple doctors, having to watch you miss basic developmental milestones, living with you days and weeks at a time in various hospital rooms away from your siblings and Aba, and most importantly having to watch you be in pain and suffer repeatedly.  You were the one actually experiencing multiple seizures a day, you were the one being forced to take multiple medications, you were the one enduring the side effects of those medications, you were the one unable to vocally or verbally communicate your thoughts, you were the one who couldn’t even sit on the sidelines to watch all of your missed milestones go by, you were the one who spent the days and weeks in the hospital getting poked and prodded.  You were the one who was participating in intensive therapies, visiting multiple doctors, and never able to use your hands functionally. You were the one who had to give up eating food by mouth because your stomach didn’t work properly, you were the one who suffered from years of gastrointestinal pain as well as at least 12 broken bones throughout your life, and I am sure if you had been able to interject, you would have a list of other challenges and pains that I wasn’t even aware you experienced.
 
If G-d ever could have granted me one wish while you were still here, it would have been to erase all of the pain and suffering you ever had to experience.  The seizures you were forced to endure during your little lifetime will forever haunt me and make me sick to my stomach.  You worked hard some days just to hold up your head, roll to your side, or to simply just continue to live.  My wish moving forward is that no other family has to endure any part of life with a child diagnosed with CDKL5 Deficiency Disorder.  My pleas would be for someone to find a way to eradicate every symptom of the disorder and completely eliminate the death sentence that it ends up becoming.  I should not have had to watch you suffer only to bury you before you turned five. I shouldn’t have had to know the struggles of living life with a child diagnosed with CDKL5 deficiency disorder, and I should not have to walk this new path as a bereaved parent.  I am sorry that we weren’t fast enough to help you my Sonzee bear, but the money we hope to raise tonight through Toast for Tanner will continue to further research and help our “small” but sadly still too large community of families of your CDKL5 siblings move closer to a potential cure.   I miss you and love you.
 
Love always,
Ema
 
**From a bereaved mom of a child who was diagnosed with CDKL5 deficiency disorder, I beg of you to think about what you would want done if it was YOUR son or daughter, if it was YOUR niece or nephew, if it was YOUR sibling or family member, and then do that for Tanner, and do it for Sonzee, and do it for every single child who has been diagnosed so that one day no new families are admitted into our support page, and no families have to have the rug pulled out from underneath them when they type the characters C-D-K-L-5 into their search engine.
 
We miss Sonzee so much.  We think of her daily, along with all the other CDKL5 kids that just couldn’t hold on any longer.  I do not want to bury Tanner.  And with your help and support, maybe I won’t have to.
Please donate and bid on auction items.  our auction closes at 10pm tonight.  We are also selling raffle tickets for a signed jersey and baseball.  I’ll post the auction site and the donation page, along with a special slideshow we prepared to better explain and show TANNER’S JOURNEY.
Thank you all and we sincerely hope everyone is staying safe and healthy out there.

I always find myself starting to write thinking it's been a long time since I've communicated an update and with the end of 2019, the beginning of 2020 and Tanner's birthday coming up, a lot has happened!
2019 ended with a number of challenges for us. Tanner was in the hospital twice with RSV and Rhinovirus and boy did they take a toll on him. He developed a movement disorder, of some sort, from the viruses, that as of today is still affecting him and It is worse than the seizures! Any time you touch him, move him, talk to him or anything, his whole body goes into crazy jerking movements that cause him to sweat profusely and often sends him into a seizure. In addition to that, our CNA (nurse) was assigned to a new case as of November 1 and the company we are working with has not found us a new one yet.  we are going on 3 solid months of NO help for Tanner and we both work fulltime. When they can find a fill-in they send one but it's not all the time and constantly training a new person on how to take care of Tanner is often no better than caring for him ourselves. The company says our area is just hard to find good care in. In addition to that, we started the elevator install back in July.  All though we were very excited, it has caused problem after problem and we still have NO working elevator.  The contractor built the shaft almost a foot too small on one side and isn't willing to make it right, so before the elevator company can even install anything, we need a new contractor to come out and expand the shaft.  Meaning our whole house needs to go back under major construction and we are in need of legal assistance as well!  We want you to know that the money raised at Toasting Tanner 2018 ($26,000) was used towards the total elevator cost of $50,000 and we cannot thank you enough!  Unfortunately, it could cost another $10k to fix the problem and another many thousands in legal help.  And trust me when I tell you that Tanner is not getting any lighter! I was also diagnosed with psoriatic arthritis at the end of last year, after living with extreme pain for a year and a half, so carrying Tanner is a bigger challenge even for me right now. So when I say 2019 ended with a number of challenges, there you have it.  
As 2020 is just starting, all of those challenges have followed us in addition to emotionally trying to make sense out of our friends getting ready for the loss of their CDKL5 child. The constant battle between your mind and your heart is very real and not everyone may even understand this. We always knew in the back of our minds that unless a cure was found, there was a good chance Tanner would not live forever.  So we fight for a cure and we hope and pray we get it, but we prepare for the worst.  but what does "prepare" even mean? 
Tanner is still not 100% well and is still fighting some sort of cold.  With no fever, there's really nothing a doctor or hospital can do for him that we can't.  When mucus builds up in him, he can't clear it and without help it obstructs his ability to breathe. So to help clear out the excess mucus we put him on a vibrating vest every 4 hours. In addition, he gets a breathing treatment of albuterol and sometimes another one of salt water to help him cough.  As that loosens everything up, we stand by ready to suction the mucus out.  All the while keeping him on oxygen for extra comfort.  Every 4 hours!!  Last week he decided to pull all-nighters.  He's pulled an all-nighter before and sleep disturbances are part of CDKL5 but he's never done it for 2 nights in a row.  48+ hours he was awake.  that's 2 nights in a row of not closing his eyes for even a second. He was just too uncomfortable!  I don't know how he did it. And then, finally, his body gave up from exhaustion and he fell asleep.  Only this time, he stayed asleep for 40.5 hours!  I'm guessing most of you have not experienced this with your child so I am here to tell you that your mind goes in a LOT of different directions when your child doesn't open his eyes in 40 hours.  I thought to myself, "is this it? Is his body just shutting down? is this the sign of organ failure? is he really this exhausted?"  Thankfully, he really was that exhausted and did wake up (thank you god), but was that my mind trying to "prepare" me for "one day"?  Maybe.  I posted in our CDKL5 group around the time Tanner had been asleep for about 36 hours and I asked the other parents for advise. I asked if there was something I was missing and if this really was a sign for something. Looking back on it now, my gut told me he was fine and was just exhausted but as a mom, your mind takes you to places you never knew you could go to.  I have always been able to chase the "what if" and negative thoughts away with hope and positivity and strength and I hope I am able to continue that way.  I truly hope that the challenges that followed us from 2019 will only bring us solutions in 2020.  And for our sweet friends going thru what no one should ever have to go thru, all I can say is that we love you, we are devastated, we are here for you always and we will continue to fight.  There is no rhyme or reason other than CDKL5.  Well...F--- YOU CDKL5. Our kids deserve more, so bring on that cure!

The reason I set up Tanner’s blog site with the name of “Tanner’s Journey” is because that’s exactly what he’s been on.  We’ve tried 17 different seizure medicines, 2 tries at a very strict ketogenic diet, 9 CBD oils, a complete holistic supplement path, 2 steroids, 2 spinal taps, 2 MRI’s, 4 sedations, 1 sleep study, more EEG’s than I can count, probably a million needle pricks and pints of blood.  A diagnosis of Intractable epilepsy (meaning medicine will more than likely not help).  A diagnosis of CDKL5. A diagnosis of Infantile Spasms, a diagnosis of lennox gasteaux.  1 ambulance ride, 3 rescue meds which have now been given multiple times, a central line drilled into his shin bone at 9-month-old.  Multiple swallow studies showing aspiration, meaning liquid is being swallowed incorrectly and going into his lungs, which if not corrected, could cause pneumonia (which he’s had once), organ failure and worst-case scenario, lead to death.  He’s had 8 different types of seizures, currently still having at least 2 of those today. On a day to day basis, Tanner is having about 20 seizure episodes a day but since he clusters them, he is actually having anywhere from 1 to 50 seizures within each episode.  So, on a bad day, he could have 1000 seizures in a single day!  Tanner has a care team made up of about 18 different specialists and therapists and that doesn’t even include his family. The pharmacist at 2 different pharmacies know us by name, as do the sweet ladies at LabCorp who take his blood, and now that Tanner is in Kindergarten and riding the bus, the entire school board will eventually know us by name as well.  or at least me. 😊
We do not and have never wanted sympathy or hand-outs.  We try to live as normal of lives as we can, for our happiness and sanity and the happiness of all our children, but there’s actually nothing normal about our lives.  We fight Tanner’s battle with him every single day.  We make necessary accommodations to our lives, our cars, our golf cart, our house, our work schedules, our personal lives.  We do what we have to do to make sure Tanner is happy and comfortable.  There’s only so much we can control though, and Tanner’s seizures are completely uncontrollable.  Tanner has been seizing every single day since August 14, 2014. That’s 1836 days and as I already said, he has way more than 1 seizure a day. Seeing him seize is not something that we just easily get used to seeing.  There’s nothing easy about it.  But it is our norm.    
When we came back from the hospital with Tanner’s epilepsy diagnoses, everyone kept telling us he’d grow out of it.  people came out of the woodwork saying they used to have seizures and now they’re perfectly fine.  Looking back now, I’m pretty sure I knew better, but at the time, I remember the thought crossing my mind of “yeah, maybe they are right.  Maybe he’ll be ok.  We could be lucky”.  I mean, why would Tanner have to live with this when all these other people just “grew out of it”.  Shame on us.
A couple years later, as we were traveling to Chicago for our very first CDKL5 convention we learned that a good friend of ours from high school had a son who was just diagnosed with Cancer.  We woke up in Chicago the next morning, got on FB and read that it was terminal, and he did not have long to live.  Brian and I looked at each other and said, “wow.  How awful that Tanner must live with CDKL5, but he’s alive!” That little boy, who’s name is Carson, has now passed away. We have an extreme amount of compassion for Carson’s family, but shame on us.  Tanner may be alive today, but we know nothing about tomorrow.
Why do I share these experiences with you?  because I think its important to share the fact that we are not perfect.  We are just trying to be functional.  Not even normal.  Just happy and functional.  We are learning and we are trying just like you all are.  We may not act the way we should at times or say the right things at times, and just like most of you, when we had kids, no one handed us a book that said here’s exactly what you should do.  But when you have a special needs kid who’s life is at risk, and you’re making appointments with doctors so YOU can teach them, it’s a whole new ballgame. 
Last year I spoke to all of you about a movie called Miracle which I had recently seen and parts of it really spoke to me in a very specific way about Tanner.  This year, on April 20th, Brian and I had a date night.  It was our first date night in I don’t know how long.  I had seen previews for a movie called Breakthrough, inspired by true events. and really wanted to see it.  I do not seek out these type of movies, they just coincidentally, “fall into my lap”, and I LOVE true stories.  We went to dinner and then to see this movie. 
Breakthrough is about a teenager who slipped thru an icy lake in 2015 and was under water for 15 minutes before resuscitative efforts were started. Although he was rescued, he was in a coma, and his family relied on their faith to get through the ordeal. No one, literally no one, other than his mother and his pastor believed he would come out of the coma alive…but he did.  It was a miracle but his momma never lost faith!
I know 3 things and really, only 3 things.  1. Brian and I will never lose faith. 2. We cannot do this alone and 3, a cure IS coming.  I know that sounds far fetched to some of you, but I wouldn’t go to the trouble of putting all this together each year and raising all these funds if I didn’t truly believe that it was going to make a difference.  I won’t go into the details, but some amazing things are happening at the CDKL5 Foundation and in the world of genetics and I believe whole heartedly that Tanner still has his best life ahead of him. Brian and I cannot cure him on our own though.  We need all of you and your support, we need to keep Tanner healthy and alive, to the best of our ability.  We need money, we need more awareness and more attention to CDKL5, we need his entire care taking team and more.  We need love.  I may not have all the answers for Tanner but Love he has always had.  He is kissed and hugged and told how much he is loved at least 100 times a day and if Love is what he needs until his cure comes, then his future is looking good!  Because at this point, love is all I can control.

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I thought long and hard about whether I wanted to post anything about this, but I decided that #1, I have to vent and get it off my chest so it stops bothering me, and #2, the whole point of why we do what we do is to educate and raise awareness of not only CDKL5 but special needs in general. So here goes...
I know how hard it can be to know what to say to us about Tanner. I can understand that and sympathize. We often get "how is Tanner doing?" To which we usually reply with "he's fine". I will usually go a little deeper with certain people because even thought they may not know how to ask, they want to know if his seizures are the same, better or worse. Has he been "well" lately. Is he still enjoying school. So i'll give some details, even though it wasn't asked. knowing what to ask can be a challenge and I get that completely!! The topic of using or not using the word "retarded" has come up lately too and Brian and I have somewhat different thoughts on it as do some other special needs parents. But words can affect people in very different ways depending on the context in which they were used. I wish that word were erased from the dictionary completely, but it isn't. When we were growing up, it was ok to use that word in a statement such as "How can the Cheesecake Factory run out of plain cheesecake? That's retarded." FACT: those words came out of my mouth recently. I am not in favor of the word but when you grow up using it, sometimes it comes out of your mouth and you don't even realize it. I'm not going to cry myself to sleep because I used a word I shouldn't have. The fact remains that I was also raised to be kind and loving of ALL people and ALL ages. I would NEVER use that word in a derogatory way towards a person. Does that make what I said right or wrong....that's an individual opinion. I've had lots of things said to me while in the presence of Tanner that I found inappropriate and we've been stared at a lot because we have a "bid kid" in a stroller, but I can overlook all of that. Again, we are not here to get mad or start fights or cause scenes. We are here to educate and raise awareness. So I printed out informational business cards for Tanner that explain who he is and what his disorder is and we politely hand those out in certain instances. Last week something was said to me that I just can't get over though...

While at my companies National Sales Meeting, I ran into someone who I used to work with but she was transferred to a different part of our company a couple years ago. She knows all about Tanner, is not a mean spirited person and I'm sure meant no harm to this, but when asking about Tanner, she said to me "Is he still with you"?

I've been asked what the life expectancy is for kids with CDKL5 and personally, although that's a hard question to answer, it's still educating people about CDKL5, so I don't mind answering it. but THAT question was out of line. I was in such shock that I simply said yes and looked away and when she left, I continued to cry all night long. (until waking up the next day in the anger phase, wanting to punch her lights out).
I want to raise awareness. I want to educate on Tanner and CDKL5. I want to answer your questions. I know it's hard to always know what to say and 99% of the time we can let some dumb shit go. I've said some dumb shit myself and meant NO harm by it. BUT please....just think before you speak. Asking me if my child is basically alive or dead is NOT OK!

I wanted to share an update on how Tanner is doing these days and our intentions for the elevator we so need.  In an effort to gain better seizure control and after trying over 17 different pharmaceuticals, 2 steroids and 8 CBD oils, we decided to start weaning Tanner off all medications.  To our surprise, in doing this, his seizures started to decline for the first time i can remember in his life!  He was and is still having daily seizures, but they had improved.  We were then contacted by a former Neurologist of his and asked if Tanner would be in a trial for a new anti-seizure medication.  Most of you are reading this saying, of course they said no, they decided to wean.  That's true, but we have also always said we will never live in regret.  What if this new medication works and we didn't try it for Tanner when we had the chance.  This is not a placebo trial, so he is guaranteed the actual medication.  So we said yes and therefor had to put a pause on the wean. After only 5 days, Tanners seizures seemed to have worsened so we pulled him from the trial and stopped the medication.  Since then, his seizures have not gone back to the improvement we originally saw.  The neurologist and the bio-chemical company doing the trial contacted us and asked if we'd go back on, on any terms we wanted.  There is a possibility his increase of seizures was a coincidence and unrelated to the new medication.  The tests they've done show a minimum of 2 weeks before the medicine gets into your blood stream, so if they are correct, we acted prematurely.  But who knows!!  Figuring out what's right or wrong is very difficult when all we want to do is help our son. This trial drug was announced to us at the CDKL5 conference and we had been looking forward to trying it actually, so in the next few weeks, we will be going back on.

Tanner got some new wheels!  He had outgrown his old wheelchair quite awhile ago, before insurance would approve a new one, but now he's got it and it looks much more comfortable!  We are seeking an organization that will take wheelchair donations so we can donate his old one.





The elevator...
In the 2018 calendar year, we raised $25,000 to go towards an in-home elevator that we need so much!  I had a quote from an elevator company and a contractor and the rough drawings (A $50,000 total investment).  Our plan was to hopefully raise enough money for the elevator, be approved for a wheelchair accessible bathroom from Sunshine on a Ranney Day and have another 2-3 years (hopefully) until we will need to sell our van and buy a wheelchair accessible one.  When I got up the nerve to write into Make a Wish, our hope was to put a pool in the backyard since Tanner loves the water so much, with some assistance from them.  Our plan hasn't exactly gone as planned though.  We were denied, for the 2nd time from Sunshine on a Ranney Day and have now reached our limit of applying.  Wow!!  We know many people who have received approvals and home makeovers who are not nearly as severe  as Tanner, who needs to much.  It's a shame to think that "politics and popularity" can play a part in what should be such great, kind and giving companies.  So we went back to the drawing board.  Just to give a little more background, Tanner is almost 5 years old and 60 pounds.  Carrying him in and out of a bathtub is getting very difficult and very painful and will not be possible for much longer.  Similar to carrying him up and down stairs.  His therapy room is in our basement, which he needs for his weekly appointments and just to have a room to go to and play!  The main level is obviously where he spends a lot of time with us as a family and we prepare his feeding tube to eat.  We do have a bedroom on this level, but he seizes all thru the night and it is unsafe for us to be sleeping on a separate floor.  His bedroom is on the 3rd floor.  We recently bought a portable ramp just to get his wheelchair in and out of the car because it is now too heavy to lift on our own.  This ramp can also help with wheeling Tanner in and out of our house.

Our plan now is to apply to Make a Wish for a wheelchair accessible bathroom.  CDKL5 kids do typically get approved (not that that makes me happy), so maybe we can get some assistance there.  We found another elevator company and contractor who can save us about $9k by going with an elevator lift vs. a full shaft elevator.  That would definitely help us out if that's an option that will work for Tanner.  In the meantime, I am reading up on a company called Ride To Give.  They are another 501c3 company that can fund-raise for you (i think) and help raise additional funds for medically fragile people who need assistance.  If approved, any money raised would also go towards the elevator.  If our new plan works out, we should be all set to finally make our home accessible for our baby boy, putting the pool and van on hold for now.  Just please know that it is because of all of YOU, our friends and family, that we were able to raise the $25k we have and we WILL use every penny of that money for an elevator.  Just because it hasn't happened yet, doesn't mean it won't.  The costs that go into having a severely disabled child are extreme, but we are trying to plan as best as we can to bring everything to fruition. And we will get it done!

Happy Hanukkah, Merry Christmas and Happy New Year!

I watched a movie one day called Miracles from Heaven.  If you’ve never seen it before, it’s a true story about a little girl who was born with an incurable, rare disorder that is very painful and if not cured, would have killed her.  She fell out of a tree one day, and from that day on has been cured.  True Story!  When I saw the previews for this of course I said it was a movie I wanted to see, so I saw it, I cried and I felt uplifted.  For no reason other than this little girl was cured.  My Tanner isn’t but it’s still a feel good movie and maybe a miracle could happen for him one day.  Then I watched it a second time, not that long ago and something in it stuck with me that I didn’t think about the first time I saw it.  Towards the end of the movie, Jennifer Garner, who plays the girls mom was speaking at their church about miracles but she wasn’t referring to her daughter being cured as one of them.  she was talking about all the other little miracles that led up to her being in that tree to fall out in the first place.  the way they, by chance, met a waitress who ended up being like an aunt to the little girl, bringing her happiness and hope so she wanted to go back to NY for treatments just to see her.  The kind gestures from strangers.  The huge, rotted, old tree in their yard that their children always loved to climb that would ultimately create the fall.  She mentioned a lot more but it got me thinking.  Why does a miracle have to only mean a cure for Tanner?  It doesn’t.  the change of this thought process has provided me the ability to become more at peace with Tanners diagnosis and life.  Our nanny Debora (who just left us) was our miracle. Brian and I work fulltime and that would not be possible if it weren’t for finding people to care for Tanner on an everyday basis.  Tanner is happy and safe and she is a miracle for our family.  The fact that we got approved for a secondary insurance (Medicaid) is a miracle.  If we get approved each year, it will continue to be a miracle.  A lot of people in other states don’t get approved and can’t afford wheelchairs and standers and hospital visits.  Tanner is taken care of by teams of therapists and medical professionals and a lot of that is totally covered.  that is a miracle!  The fact that god gave Tanner to us instead of parents who couldn’t care for him is a miracle!  The fact that we have such a cohesive blended family, which only increases the amount of people to love and care for Tanner is a miracle!  You hear horror stories all the time about Teachers and care takers mis-treating special needs kids but Tanner was given an amazing school to attend with the kindest and sweetest teacher I’ve ever met, who just loves Tanner.  Miracle!  My middle name is Hope.  Coincidence?  I don’t believe it is.  Everyone knows what an outstanding human being Carson is, but the fact that he is who he is, for our family, is a miracle.  The fact that Brox is here at all, is a miracle and you can read my past blogs to understand why that is.  Tanner may or may not live longer than us but if he does, he has 2 brothers to help take care of him now and that is a miracle.   Miracles are all around us and I am noticing them more and more.  they are all playing a part into Tanner’s life and I believe, leading us down the path that was meant for him. 
My approach and outlook for Toasting Tanner is a little different this year then in the past and I want to explain why because Nothing has changed for Tanner.  He still can’t hold his head up or sit up or walk.  He can’t talk.  He can’t really see or use his hands.  He still eats thru a feeding tube, aspirates and he still has multiple seizures every single day.  He recently had such a bad seizure that he threw up and aspirated some of that, causing him to choke.  We had to break out the suction machine to help clear a pathway for air in his mouth and throat and after that, he quickly developed a fever and low levels of oxygen, requiring us to rush to the ER where he was admitted and diagnosed with pneumonia.  All of that happened in just a few hours, with Carson scared to death watching, Brox pushed to the wayside because his brother required more attention and all while knowing this could easily happen again and again, with an outcome not as good we experienced.  With all that said, I am still, more now then ever, optimistic about the potential future for Tanner.
We went to the CDKL5 conference this year and learned about multiple new trials and medications coming up in the next 2 years for our kids and a potential cure by 2025! How?  A few things are being  researched, such as CBD oil.  The very first CBD oil was just recently approved by the FDA and is curing and improving seizures for people.  Just 2 years ago we were fighting with neurologists across the U.S. to even consider this and families were moving states to buy this legally and now, insurance is paying for it!  We were lucky enough to trial this for Tanner early on and it didn’t work for him but it’s working for some CDKL5 kids! The most exciting information we received though is about gene therapy which has already begun with RETT syndrome and is also being tested on embryos in China.  (yes, very controversial, but becoming more accepted). RETT is what we call the sister disorder to CDKL5.  RETT kids appear to be healthy and typical at birth.  They learn to talk and walk and do everything.  And then all of a sudden it all ends and they regress back to an infant, where tanner is.  RETT is caused by a defective MECP2 gene so by activating the silent MECP2, gene therapy and protein replacement can actually cure the kids.  This has been proven and is happening!  Other approaches may still improve symptoms and act as great treatments.  CDKL5 is an X-linked disorder.  Girls have 2 X chromosomes and boys have an X and a Y.  One idea being tested is if you are able to turn off the defective X in girls, they can function using their other X.  They believe this could ultimately result in a cure!  We think boys will be able to benefit from this type of therapy, but it cannot be a cure, since their affected X is the only one they have. 
The other type of gene therapy being researched is called CRISPR.  There’s a BIG buzz on this type of gene therapy right now.  Chinese researchers were the first to CRISPR monkeys and non-viable embryos and to stick CRISPR’D cells into a real live human!  And now, a team of scientists have used this technique to repair a disease-causing mutation in viable human embryos. Just imagine being able to take your own embryo, during an IVF procedure and altering the cells to take a life altering disease out, before it’s implanted!  But what does this mean for Tanner?  It means we are on our way to doing actual gene editing!  To swapping out a single DNA nucleotide for another.  So far, the studies show the correction of mutations that cause some rare diseases. This entire field of base editing is only about 2 years old, but the company is focused on using base editing to treat serious diseases in children and adults only, not on embryo editing, so could this mean a cure for Tanner?  We hope so. 
But when I say “cure”, what does that even mean?  To be honest, this word has brought much hope to some CDKL5 families and it has caused much heartache to some as well.  a lot of parents, like us, will never give up hope for our children but in order to be able to live life, we have to remain realistic too.  We spent the entire 1st year of Tanner’s life questioning everything.  Why us?  why him?  what does this mean for his future?  What does this mean for ours?  Will he die and when?  Will he ever walk?  Will he ever stop seizing?  Now, we have come to terms with CDKL5 for Tanner and somewhat accepted that this is just his life so let’s make the best of it because all we have is hear and now.  tomorrow is never guaranteed.  We approach any new trial or medication or therapy as “realistically optimistic”.  But just like for some other parents, it has taken quite some time to reach this point and having too much hope just ends in disappointment.  So the word “cure” may mean something different to us than it does to some.  Tanner may never speak, but maybe a cure could mean some sort of motor activity with his eyes or hands!  maybe gaining muscle could become a little easier for him over time and he could learn to at least sit unassisted.  Maybe his seizures will actually go away and his brain could start to function and learn!  Do I realistically believe he will become typical like you and i?  no.  I don’t.  but that’s ok and if only 1 thing improves, I view that as a partial cure and a miracle!  So now, reality and hope have started to blend.  Why do any of you care about this?  because you are our friends and you care for us.  CDKL5 kids are dying.  Period.  Our job is to keep Tanner as happy and as healthy as we can until that cure or potential cure becomes Tanner’s reality.  The realist in my head still has visions of Tanner’s funeral because whether we want to admit it or not, that is a possibility and I have to be strong enough to live thru that for the rest of my family, if, god forbid, that happens.  But the hope in my heart says we are on our way to a cure and miracles are happening.  So until a cure comes, we have to figure out how we can continue to best care for Tanner.  He is getting too big to carry up and down the stairs, He seizes all night long, so I can’t move his bedroom and then sleep on a separate floor as him and chair rails are made for the elderly.  Not for kids who have zero head control and need a harness and the chair to be reclined.  I’ve researched and had multiple companies come to the house.  An elevator is the only thing we can think of other than moving, that could help us.  But unfortunately, we also need a wheelchair accessible bathroom, a ramp to get into our house and a wheelchair accessible vehicle.  Tanner is 4 years old, he weighs 60lbs and is almost 4 feet tall.  Those 4 Maintenance items to care for Tanner will cost about $150,000 total.  That’s why we are here tonight.  We have raised a lot of money for the IFCR in the past and will continue to do so in the future, but for now, we need to think of ourselves and Tanner.  Thank you all for coming, thank you for your tremendous support and love and for helping us spread awareness about Tanner.  It’s working!  Companies are getting involved in the rare community because we are speaking up.  So please continue to do so!  Let’s all raise our glasses and Toast Tanner.  Tanner, may your future here on earth be long and filled with happiness and may you get stronger and healthier with every single rise of the sun. And may a CURE be in your very near future!

3 weeks from today (or sooner) our family will finally be complete and our newest son will be born (via scheduled C-section).  Throughout this pregnancy so many people have asked me if I'm ready and if I'm excited.  Those 2 specific questions.  So as to not go into the details of my true feelings, most of the time I just say yes to both, but that is not totally the truth and I think only another special needs mom/parent can truly relate and understand.
When I was pregnant with Tanner I was not nervous at all.  I've known all my life I wanted to be a mom and I had confidence that I'd figure out how to be a good one. But in my head, the ONLY scenario I had considered was how to be a mom to a typical and healthy child.  Brian and I got pregnant almost immediately, but I miscarried.  Once we started trying again, it took a little longer, but got pregnant fairly easily again, after 4-5 months.  It wasn't until Tanner was a newborn and I was walking with friends in the neighborhood that I asked "if we want another child, how will I ever love them as much as I love Tanner?"  I struggled with that the second I started considering another child, and Tanner's disorder was completely unknown. They responded how almost anyone would, with "you just will".
Brian and I try to have as "normal" of a life as we can and also be parents to a special needs son, along with a typical/ older son.  We know that if we are not happy and active and social and working, we will not be as good of parents as we need to be.  But that is much harder to do than you think. I hate to say that my life revolves around Tanner because again, I try to live a normal life, but at the end of the day, my life revolves around Tanner...and it always will.  He requires more than most.  More attention, more dedication, and yes...more love.  Love is all he knows and can feel from us.
Enter a new child....We had a difficult time getting pregnant this time around.  we tried everything for about a year and a half, with a specialist.  We were tested for everything and there were no signs that we couldn't get pregnant, yet we couldn't. Due to my age, we decided to do IVF.  I have referred to this baby, Broxton, as our miracle and here's why (I'll try to summarize). The doctor was able to extrapolate 19 eggs from me, which I was told was extremely positive!  the eggs then have to go thru many different stages to determine if they will survive, then to be fertilized, then to grow/survive again.  they expect about half to drop off.  At the end of this process, we had 3 that were fertilized, but only 2 looked as if they'd make it, and even those 2 weren't "graded" well.  This was a long and very expensive process that we only had 1 shot at.  I received this call on CDKL5 awareness day 2017, as our entire cul-de-sac was filled with people waiting to begin our balloon liftoff.  I cried behind a golf cart and then had to suck it up and move forward.  We decided to do genetic testing for obvious reasons.  Only 2 of the 3 survived the next 2 days and were then sent for genetic testing.  Only 1 of those 2 came back genetically healthy.  We started with 19 and ended up with 1 and all we could do was pray that it turned into a pregnancy once it was inserted.  Obviously it did...and now we have our miracle baby.  Excitement!!  But now comes Scared.  I had no idea how to be a special needs mom but as each day goes on, I try to do my best.  I think I've been doing ok considering, but I'm about to give birth to a, please god, healthy child.  what will I feed them? Tanner has never been able to chew and now has a feeding tube.  Do they just learn to sit and pull up and stand and walk all on their own?  Tanner could never do any of that. How important is it to baby proof my house and move all the breakables and chemicals?  Tanner never bothered with any of that. Will he actually talk and say momma? will he learn how to repeat me if I say a curse word? (haha).  Tanner never did (and Carson was too smart to).  Will I have to teach Broxton how to swim rather than just holding him myself? Will I actually wake him up to go to school in the morning vs. letting him wake up all on his own since Tanner only sleeps in due to his body seizing so much and being over exhausted and needing his sleep?  Will he make friends that actually ask to play with him?  This may seem trivial to most of you but I'm about to be a first time mom...yet I gave birth to a now 4 year old. When Tanner seizes and starts to fall asleep, we tiptoe and whisper.  Will that still be possible?  I'm sure not, but how will I handle that?  I have no idea what we are about to get into but I am scared to death at whether I will be able to be a good mom to a "typical" child.  I think a little part of you always loves your first born just a little more than the others, and I think that's normal.  Or maybe Tanner is just so extremely special I can't help it.  I want to bond with Broxton and be a good mom and I have no doubt I will love him.  But I still think Tanner will always come first. I just hope that doesn't make me a bad mom and Broxton grows up to understand and can love and play with Tanner like we all do.  I hope god gives me enough strength to be a good mom to all my boys.

​When Tanner was only 14 months old, after multiple medicines unable to control his seizures, we decided to start him on the ketogenic diet. The Keto diet is a high fat, low sugar diet that has been proven to help control seizures in some people. It changes the source of energy for your body, so instead of your body getting energy off of carbs, it now runs off of fat. It is very strict because based on the bodies natural ability to make Ketones, every single morsel of food that goes into your body needs to be measured out. your body can absorb sugar from almost anything, so we had to change lotions, chap sticks, sunscreen, soap, etc... Not just food. At that time, Tanner was eating solely by mouth, so all his meals were specific recipes given to us by a team of doctors and nutritionists, which we had to measure out each day, for every meal. Luckily, Tanner naturally produces ketones easily, so getting him into ketosis was fairly easy. Tanner stayed on this diet for over a year, but it did not help control his seizures. We gave it our best shot at that time.

Last week we checked in Egleston Hospital to start Tanner on the Keto diet again, at almost 4 years old. Tanner has been seizing, with no break, for almost his entire life, after trying MANY medications, oils, steroids, etc.. After discussing this option again with his primary neurologist and his Ketogenic Neurologist, we were told that the diet is often more successful in kids who are a bit older. At 14 months old, Tanner was going thru tremendous growth spurts and monitoring how many calories of fat vs. protein vs. carbs was very difficult. He is also now solely tube fed, making it easier for Tanner to consume all daily calories, which is again necessary to maintain ketosis. We were given a potential 15% chance of success this time around. 15% may not sound like a lot to you, it doesn't really to me either, but if there's even a 1% chance of helping Tanner find some relief, we must try it.

Before checking into the hospital, I scheduled another swallow study. Tanner has had 2 prior and both times it showed aspiration. After the first test, we started buying a thickener to add to all his liquids, which at the time was the only thing he was aspirating. He was still eating purees by mouth. After the second test, we made the decision to put him on a feeding tube because it showed he was still aspirating liquids, which he was refusing to even eat anymore (bottles of formula), but it also showed aspiration of applesauce (purees). He had a delayed swallow, so the food would just sit in the back of his throat until he finally decided to swallow it and by that time, parts of it were being aspirated. He was getting very skinny and we simply didn't have a choice. Since then, Tanner has been completely tube fed, but we still make a couple thicker purees for him as a snack, just to give him the practice of using his jaw and tongue and swallow techniques. We would only give a few bites a day but his swallow seemed to improve because he loved eating so much, he gobbled it down! I was pretty sure he was still aspirating, but before moving to a diet that would limit us from feeding him by mouth even more, I wanted it confirmed. The swallow study test showed that he was now also aspirating the even the thicker purees we were making him. he no longer showed a delayed swallow. He enjoyed eating so much that he swallowed it right away, but parts of it were still being aspirated. The worst part about it is that he showed NO signs of it bothering him. No coughing, uncomfortable face, nothing. So unless we did the test, we'd have no idea he was aspirating anything. This is dangerous. It was now confirmed and although it was news I expected, it's never easy to hear. Tanner has always loved eating, so I am now faced with the impossible determination between quality of life and safety. To some of you this may not seem like a hard choice. You choose health and safety right? But for us, with a disabled child who shows signs of happiness for VERY FEW things, and so far has been pretty healthy in terms of viruses, sicknesses and pneumonia, you want to make sure he has all the things in his life he loves, as often as possible. And here we are, taking that away from him.

The day we checked out of the hospital we were given instructions on how to make his new formula while on the diet and all our choices and options for other products. My 1 main question was what we were to do when Tanner throws up, which has become a daily occurrence for him during rough seizures. We were told that it is that much more important to try and get Tanner's seizures under control now then ever because since he is aspirating so often, there's a good chance he is aspirating a little bit, every time he throws up, and while on a higher fat diet, those foods getting into your lungs could have a worse effect. This was not information I was aware of or prepared to hear because like almost everything else, I have no control over it. So...I cried for a little and then came to the same realization our family has had to come to since he was born...it is what it is. Life goes on and all we can do is to continue our fight.

Tanner is still in a very sleepy state from the diet and had very little changes to his seizures as it is too soon to tell anything. Please keep him in your prayers as I know you all do and let's hope for some relief for a little boy who really needs and deserves it!