Tanner has been thru more in his lifetime than the majority of us in this room will ever go thru, and he’s only 2 ½ years old. Do any of you know exactly how many smiles you’ve seen your child give? I bet not because they come so frequently, thank god. I bet Brian and I could sit down and count the amount of real smiles we’ve seen from Tanner. When Tanner smiles, we stop what we are doing and we smile back. We run into the room and we celebrate that smile! CDKL5 is terrible, but those smiles, as few and far between as they are, they are what give us hope.
Hope, hope is challenging at times but without it, what is even the reason to live. So hope we have! Love, Love is very easy for us to give. It comes naturally and in abundance. Cure, cure is why we are all here tonight. Do you ever think back to the very first person who was diagnosed with Cancer. Maybe the very first person had lung cancer. And the next week someone else was diagnosed with liver cancer. The week after that, brain cancer. How on earth will they find a cure for Cancer when there’s so many different kinds, that are affecting people so differently? I pray to god that a cure is found one day, but do you know how much money the Cancer society raises today? They raise more money in 1 day than the IFCR raises in a whole year. Remember the starfish story I told at the balloon lift off. That’s not just a story, it’s the truth. A boy, walking along the beach sees hundreds of starfish that are getting washed up on shore and dying. The boy starts picking them up and throwing them back into the ocean. A man comes up to him and says, young man, what are you doing? You can’t possibly save them all. It’s hopeless. You can’t make a difference. The boy picks up another starfish and throws it into the ocean and says, “I made a difference to that one”. Our Tanner is that one and he needs your help.
While at the CDKL5 convention, we got more clarity on Tanner’s specific genetic mutation. We found out, without making this too difficult to understand, that Tanner does not have a deletion of the CDKL5 gene. IN fact, his gene or protein is all there. but there’s 1 amino acid, on exon 6 of the entire protein that is replaced with a different amino acid. 1 amino acid change, amongst billions, is causing ALL of this! we found this fascinating and unbelievable at the same time. Imagine all 1500 cdkl5 kids having a different genetic report because each person had a different amino acid change or it was occurring on a different exon. There’s no way to test a medicine or find a cure for everyone if each person is affected so differently. Or is there? The work the foundation is doing is truly amazing! They are on the cutting edge of new medicines and surgeries that could help Tanner! There’s currently 3 centers of excellence for CDKL5 and Rett, meaning hospitals that focus specifically on CDKL5, where doctors see CDKL5 patients around the world and spend their time focusing their efforts on kids like Tanner. The foundation is investing time and money into potentially opening up Emory as the 4th center of excellence. Do you know how amazing that would be for us? How amazing that would be for Landon’s parents, who are here again this year! Those are just a couple of examples of where your money is going.
We wanted you to feel confident that your money is being well spent on things that could potentially save Tanner’s life.
Harper Howard, Sorrel Jay Bratton, Paige burns, Dani Smith. Those are names of CDKL5 children who have gained their wings in heaven just this year, that we know of. We don’t know what tomorrow may hold for Tanner. I don’t think we were hand picked to be Tanner’s parents, I don’t think we are any more special than any of you and I don’t think we are any stronger than any of you would be if your child were also in pain and needed your help, but I know for certain that we cannot do this alone and thank god we’ve never had to.
Words will never be able to express how much love and appreciation and thanks we truly feel for all of you. We met other parents at the convention who said how jealous they are at the amount of support we have. We truly could not survive without the friendships we have made and love we receive from all of you. I never thought I’d be thankful that Brian and I both have parents who are divorced, but they are all happily re-married, so for our family, that means 4 full sets of grandparents who love the heck out of their grandchildren. Thank you for supporting us and loving our baby boy so much. I’ve heard from a few people that they can tell how much tanner really reacts to me or to Brian or to Carson. That you can tell he recognizes us and loves us. We see that too, but something that brings us so much joy is when we can really see when tanner is happy. Tanner has 4 different therapists that each work with him on a weekly basis and he loves them all, but his favorite therapist, by far, is here tonight, his speech therapist Jill. His Occupational therapist was at the balloon lift off and the company they and his physical therapist work for is one of our sponsors, noted in the programs. I want to specifically thank my cousin Sarah for flying in with her boyfriend Grant from Chicago to be here tonight. To one of my best friends Miranda for coming in from NY, and my awesome friend Tina, who’s husband Josh is our chef tonight and donated all the food for free, so more of your money could go straight to charity. Brian and I want to again thank Heather for organizing this event with us and of course to big brother Carson, who on a daily basis, teaches us love, kindness and forgiveness, just by being himself.
I’ve prepared a little slideshow and when it’s over, please eat! And don’t forget the items you see out and on tables are part of our auction and we will close them out tonight! But don’t forget our online auction too, which is still live and doesn’t end til the 31st! www.biddingforgood.com/toastingtanner