My heart shattered
Foundation to Fight H-ABC has been the guiding light that showed up right when I needed it the most. My name is Miesha and I’m a single mother battling an autoimmune disease called ankylosing spondylitis alone with my son Tilyn Sincere. He was born healthy and grew into this bright bundle of happiness. As early as one, he started showing signs that something wasn’t right. We went through years of doctors guessing treatment options or assuming he would grow out of delays and begin thriving like most children do. In the beginning of 2024 we finally were told he had a number of things going on. He was diagnosed with clonus, autism, and cerebral palsy which is a crushing blow to say the least. We had already been in therapy prior to the diagnoses but I kept seeing a decline as the months went on.
July 17th 2024 was the day that changed everything. I had found a new neurologist and hoped that she could explain what was going on to make my life a little easier. My answer was a rare condition called hypomyelinating leukodystrophy disorder that often can be fatal, but it will cause his brain and body to slowly lose communication, thus impairing his body to operate as it should. My heart shattered in an instance, what mother can bear being told that your child will live as long as his body will allow, there is no cure, and we will only be able to manage his quality of life. I FREAKED OUT there was nothing I could do to stop it and I had no one to help me navigate what was to come.
Struggling to grasp this new reality I went looking for answers and I found the Foundation to Fight H-ABC. I found my lighthouse; they provided me with mental comfort, emotional support, and resources to navigate these rough waters. Everything is still brand new but with this foundation we have been able to see the steps to start this journey. Tilyn is already on a path others waited years to be on and it was all possible with the support of this foundation. With rough seas ahead of us, Tilyn and I won't have to navigate this alone with our new family of H-ABC fighters
