Brantley Maddox Taylor came into this world June 10th, 2014, and the first 24 hours were a blur as he had so many complications. After being in the NICU for 9 days, we thought our baby boy was perfectly healthy. However, we almost lost Brantley when he was just 2 months old, and it was then the doctors realized that something was wrong with our sweet boy. We got the devastating news on August 23rd, 2014 that Brantley had MECP2 Duplication Syndrome.
As his mother, my world came crashing down, and all the plans and dreams I had for his future instantly vanished into thin air. The relationship that I envisioned between Brantley and his older sister, Gentry, running around the house squealing at the top of their lungs, was gone. Bryan and I had dreams of the type of relationship we would have with our son that changed with the words MECP2.
Brantley is 18 months old, and he can only sit unassisted for less than a minute at a time, a huge milestone in our household, yet still he should be running and toddling everywhere. He has a very weak immune system that leaves him sick almost monthly. Brantley is fed entirely through a feeding tube, another devastating aspect of this disorder; he is unable to enjoy the taste of delicious food along with so many other things that you and I take for granted.
Brantley is not defined by MECP2, there is so much that keeps him happy and things he CAN do. He loves to watch his sister play and get in his face, he giggles with delight! He is a terrific sleeper. He doesn’t EVER cry when he gets a shot or gets an IV placed. In fact, he rarely ever cries and is one of the happiest babies I have ever known. He is so sweet and loves every person he meets. He is a strong warrior much like all the other MECP2 children.
We are on the brink of a cure for our children and need all the help we can get to give our children the life they deserve. Our family cannot imagine a life without Brantley in it and would be devastated to lose him. Please help us fight for the cure!