At 3 months old, tanner was not making eye contact or smiling often but the doctors kept saying not to worry because he just might be a little delayed but it’ll happen. It’s common. Mother’s day week/weekend, we took him to Destin. I had seen what I thought were seizures a couple times but no one really believed me. After Brian saw for himself what I was talking about, we came back, went to the doctor first thing Monday morning and were then told to go straight to the hospital. We spent a week in the hospital where he had multiple confirmed seizures and was diagnosed with epilepsy. We have seen Tanner seize thousands of times at this point, but during that week, watching our 3 month old newborn baby seize was not something than can be compared to anything. It was the worst time in our lives…so far. Tanner was put on an anti-seizure medicine and for the next 3 months, he went seizure free!
All we heard during these 3 months is how he would grow out of this. He’d be fine. Epilepsy was so common! So For the first time, hope set in and we chose to believe everyone else. Even though Tanner was still not meeting ANY milestones. The day of the magnolia walk in august of 2014, at 6 months old, Tanner had his first seizure, again. That was almost exactly 3 years ago and Tanner has been seizing every single day since.
October 31st of 2014 was Tanner’s first Halloween! He was still in daycare at this point and I was so excited to go to school with his costume so he could be strolled around in their parade. What a fun day with friends! When we brought him home, we did another parade in our neighborhood and because it was so cold that year we quickly brought him back home as Brian and I took turns feeding him and getting him to fall asleep while socializing in our cul-de-sac with neighbors and kids. We had tents, drinks, chili, candy and tons of people. I ran in to check on Tanner who was with Brian and he felt very hot to me. Remember, just a few hours earlier, he was perfectly fine! I knew that fevers could bring on seizures so I didn’t hesitate. I went to get Tylenol to give him but before I could measure it out, he started to have his first tonic clonic or grand mal seizure. Now he can’t swallow anything. I had NO rescue medicine at home because the doctor refused to give it to me since Tanner was so young. I don’t remember how long I waited in hopes that it would end, but it never did, so I called 911. I notified people outside that an ambulance was coming and then I wish I could say that everything got blurry and I don’t remember, but I remember every detail. Tanner seized for 45 minutes straight. Picture an almost 9 month old baby, shaking uncontrollably. Brian held him the whole time until it was time to put him in his car seat and be transported onto a stretcher and into the ambulance. For the first time, the thought crossed our mind that our son may not make it. This was the worst time of our lives…so far. As our neighbors, who are almost all her tonight, prayed with us and for us, we went to the hospital. Tanner had been seizing for so long that when we got there, they couldn’t find a single vein to get an IV in. So they drilled, yes drilled a central line into his shin bone…as I watched. Tanner had caught a virus, similar to ones you and I catch often, but for tanner, this was the result.
6 days later, Tanner was diagnosed with CDKL5. This was the new worst day of our lives. Our son would never just grow out of his seizures. We “choose” to remain hopeful and positive, but more thank likely, tanner will never walk, never even sit up unassisted, never have use of his hands, never be able to see clearly, never talk. I’ll never hear what my son’s voice sounds like as he says mommy or daddy or I love you. How annoyed do you get when your kid wants your attention and says mommy, mommy , mommy. Now imagine you could never hear it again.
2 weeks later, we had our first fundraiser at a boutique in the city; we designed, made a sold special “Tanner bracelets” and raffled off a ton of fun stuff. With lots of help, in a very short amount of time, we raised just over $12,000! This was our therapy. This was our way of not feeling helpless in a very helpless situation.
In the past 3 years, Tanner has tried 14 different pharmaceutical anti-seizure medicines, a very strict diet of no sugar or carbs called the ketogenic diet, 7 different CBD oils, including straight THC, 2 steroids, a complete holistic supplement path, a VNS implanted into his chest and a feeding tube placed into his stomach. Nothing has helped him. We have witnessed at least 8 different types of seizures and currently he is having clusters of multiple seizures, all at once. I now know that they are called hyper motor tonic spasm episodes and they are very common in our kids. You would think that after witnessing your child seize every single day for the past 3 years, you’d get used to it and it would get easier. But if you listened to this every day, could you ever get used to it?
When I was a little girl and then a teenager, I had visions of my wedding, like a lot of girls do I’m sure. As you get older, some of you may have visions of watching your little girls walk down the isle. You imagine your little boys in a cap and gown, graduating college one day. When I was pregnant I dreamed of Tanner’s Bar Mitzvah day. Shortly after Tanner was born though, all those dreams disappeared. Now…now I wonder and actually dream of a potential funeral one day. I know that sounds so harsh to hear and believe me, it was really hard to write. 2 CDKL5 boys have passed away just in the last 30 days. Boys! There are less than 100 CDKL5 boys in the whole world yet 2 in the last month are gone. As parents of a severely disabled child, Brian and I have had to sit down and discuss what would really be better. Selfishly thinking, we of course want to go first just like all parents should. Why would we want to bury my child? And we don’t. But what’s the alternative? Who is actually capable of taking care of Tanner besides us? If we went first, who would devote their lives to his therapy, his medicines, researching new surgeries and new trials and new medicines. Who will put him to bed? Who can carry him around the house? Who will fight for him when his doctors say there’s nothing more we can do. Who will wake up with him all night long and comfort him as he seizes? And who really “should” have to take on that responsibility BUT his parents? So the reality is all our thoughts and dreams and ideas of who Tanner would be need to be tucked away because that is just not his path. That was OUR path. Those were OUR dreams. So for as long as Tanner is with us, we will try to give him the best quality of life we can. We will buy him Ferrari’s so he can stroll around the neighborhood like the other typical kids. We will take him to the pool and let him swim because he loves it so much. We will fight to win grants to get him the equipment and toys that he could benefit from. We will take him to the park and to his big brothers baseball and basketball games. We will love him, unconditionally, with our whole hearts, forever.
Hope is such a hard thing to have, yet it’s something that is almost too natural for parents to not have. After 3 years of trying almost everything, how could we still have hope for Tanner to be seizure free? We don’t. But we’ve learned that hope isn’t always all or nothing. We do have hope that although he may never be seizure free, we think better seizure control is possible. We think a better quality of life is possible. Tanner doesn’t appear to have an ounce of muscle on him so how could we still have hope that he could sit on his own or walk one day? Because we are his parents. But I am also realist. And realistically thinking, without a cure, he probably won’t walk or talk, ever. But thanks to YOUR donations, we get closer and closer to finding a cure and a better quality of life each day! The foundation has been working with a few Pharmaceutical companies to evaluate some potential new therapies in CDKL5. As you all know, one of the big problems of CDKL5 is seizures. Just a few weeks ago, the first finding had been made to identify one of the potential causes of the seizures. The foundation is already using this information to design a trial with a unique drug that could effect that pathway, and we hope bring us our first truly effective therapy to help decrease seizures.
After 1 small fundraiser and 3 Toasting Tanner’s, if we reach our goal this year, we will have raised almost $85,000!!! From the bottom of our hearts, thank you all. Thank you for being here. Thank you for including us and tanner in your lives and the lives of your children. Thank you to Brian’s sister Tiffany for flying in from Chicago to be here tonight. Thank you to our friends Miriam and Bryan, CDKL5 parents to sweet Landon, for coming every year and supporting us and to Landon’s aunt and uncle who are joining us tonight! Thank you to our parents who have never said no…to anything! They are such an amazing support team to us and we are so blessed to have all of you! Thank you to Carson for sitting around with us on weekends when we can’t do anything because tanner is having a hard day…and not complaining. He happily just “gets it”. And thank you to Carson’s mom, Heather, who doesn’t see Brian as her ex or me as the stepmom. All she sees is that Tanner is Carson’s brother and for that reason alone, she loves him and supports us.
Lastly, let’s all raise our glasses and Toast Tanner. We are here to help all children living with CDKL5, but we do it in the name of our special, little boy. 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.