Benjamin was born in June, 2017, nearly a month early. He struggled with feeding early on, and at the 6 month mark his doctor identified that he was missing his milestones. At 9 months he was referred to early intervention services, and he has been in therapies ever since. At 2 years old, after much searching, the source of Benjamin’s struggles was identified as ATRX Syndrome. It was heart wrenching to have my child’s future defined in such a way that promised limits a parent never wants for their child. I still have trouble coming to terms with the diagnosis. The reality that my beloved son will have physical and perceived intellectual limitations, that he will not have the chance to have children of his own, is incredibly hard to digest.
Even with all his struggles, he’s a happy little boy, and very loving toward his siblings and family. Benjamin works so hard to accomplish things that come so easily to many of us. Something as simple as finger isolation, which enables us to push a button or point, is something he is still working to master. These types of challenges are really hard on Benjamin, but he works hard, he keeps going, and he does it with a smile. He inspires me to keep pushing forward, even if the pace is slow, because the gains are worth it. But more importantly, he helps me to appreciate the little things, and cherish every moment.
Benjamin attends the local school for the blind and visually impaired, and all the staff just love him. He always offers cuddles and smiles, and he is such a hard worker. I am so proud to be his Mama! I do not let the diagnosis define him, I instead understand that ATR-X syndrome is a condition that he has to deal with, and it is very hard. But he is so much more than a kid with ATR-X, He’s Benjamin! He’s my Benjamin, and to me, he’s perfect. He deserves all the opportunity and support in the world, just as we all do. And the fact that he will be limited in so many ways, yet he is so beautiful, kind, and just perfect, gives me this amazing drive to fight for him, and people like him. I want to give them the best life possible! Will you join me in this fight?