It’s time for another Cdkl5 Spotlight! Let’s meet Tanner! Mom, Courtney, shares about her special boy.
Tanner began seizing at 3 months old. We received a diagnosis of Epilepsy at that time and thanks to Phenobarbital, he went the next 3 months seizure free! Due to the fact that he was not developing, we did more testing and received his diagnosis of CDKL5 at 8 months old. Early in his life, we started with PT, OT, vision and Speech therapies weekly and he still receives these, in addition to aqua therapy and music therapy (at school) which are his 2 favorites! He is free to move his body all on his own in the water and it seems to soothe him.
His first year, even into his second year of life, it was extremely difficult for us as parents. We questioned everything and we were focusing all of our energy on trying to cure the seizures. As time has gone on though, we have learned a few things. Tanner is now 4 ½ years old and looking back to the first year, I remember watching him try to prop sit in his therapy sessions, being so proud of him when he could do it on his own for even just 10-15 seconds. His therapist and I screamed out loud and cried the day he did it for 30 seconds! Those accomplishments are not to be over-looked because they were HUGE for Tanner.
Tanner has tried 15 different anti-epileptic medicines, 2 steroids, 9 different CBD’s, 2 different tries at the Ketogenic diet and had a VNS (Vagus Nerve Stimulator) implanted, and he is solely G-Tube fed. That is quite a mouthful! But when I describe Tanner to people who don’t know him, I describe him as being overall pretty healthy! His organs are intact, his oxygen level is usually very good, he doesn’t get sick often at all, other than reflux his GI track seems to be working well.
It’s mostly just the seizures, but when we finally realized that Tanner is who he is, we stopped chasing the seizures and just focused on making sure Tanner was as happy as we could control, and since then, we just enjoy making memories together as a family.
It is much less stressful for us all! Tanner’s seizures never held him back…we did. Some things in life just cannot be controlled and CDKL5 is one of those things. We will never give up hope for a cure. We will never stop fighting for better days. We will still try new medications as they come into trial. We will never live in regret that we should have done something more. But we try to focus on the day to day happiness for Tanner, just as we do for the rest of our kids.
This past fall, we signed Tanner up for The Miracle League and he got to play baseball for the first time! You could tell a noticeable happiness on his face as he was pushed from base to base, after hitting the ball and his family and friends cheered for him and called out HIS name as he ran over home base. It was truly amazing to watch and be a part of. He even received a medal and although it may sound silly to some, Tanner receiving even just a participation medal was one of my happiest days. Yes…I even cried. I just never thought it would happen for Tanner. Shame on me for being so closed minded, because our kids CAN do anything if we just think outside the box a little.
I believe we were all put here for a reason and most people may live their whole lives not knowing what that reason is, but WE know. All the stars aligned and we were blessed to be Tanner’s parents. We are his voice because he is not capable of using his own. But it goes farther than that. There are special needs children/people all over the world that cannot speak for themselves and our calling is to raise awareness and speak up for them.
Because of Tanner, I am a better and stronger person and mom.
Our CDKL5 kids go through so much and yet they still continue fighting. So that is what we shall do too. If you are reading this and you are a newly diagnosed family, just remember it DOES get easier in time. It may not ever be easy, but you will find what works and there is a huge CDKL5 family waiting for you when and if you need to talk. Remember to make time for yourself and take some breaks when you can. Find a good babysitter!