Meet Killian Bearden...
Killian was recently diagnosed with Xia-Gibbs Syndrome, which is newly recognized by medical science and referred to as an AHDC1-related intellectual disability - in short, he has a genetic mutation. XGS is characterized by hypotonia, delayed development, intellectual disability, ataxia and a handful of other symptoms that Killian experiences, but the causes of XGS are still largely unknown. Because of the unknowns, he has been subject to testing at Wake Forest and Duke medical centers for most of his life. He has been seen and had his case reviewed by dozens and dozens of neurosurgeons and neurological specialists, ophthalmologists, dermatologists, endocrinologists, geneticists... the list goes on. He even became a part of the Undiagnosed Diseases Network that led us speaking to doctors all around the world. We had no idea what direction to go or what to expect and nobody could tell us, and it took around 7 years to receive a diagnosis.
At the time of Killian's genetic testing, there were only 17 other cases in the WORLD that had mitochondrial DNA test results that were similar to his.
When Killian wasn't being seen by a doctor or having his case reviewed.. he was proving people wrong. Doctor's weren't sure he would ever walk.. so he did. They said he may never speak.. so he learned sign language and can say most one syllable words and is working very hard to learn more. There is A LOT that we don't know about Killian's disorder, but what we DO know is that he is FULL of life.
He's happy, he's sweet.. He loves to laugh, he loves his family, and he LOVES "ball". Killian's dad and older brother are both lovers of the game of baseball and he followed right behind them. The opportunity to take the field with the Challenger team and play the game he's loved to watch has been nothing short of perfect. His dad and brother taking the field with him and the rest of his family cheering him on when he gets a hit and runs the bases... it's a dream come true for him.
This is Killian's first season with DLL. His dad played at DLL for many years as a child and is now a DLL coach for his older brother, who currently plays at DLL for the River Cats (machine pitch).
