Name

Dylan is a two pound, 30 week premature identical twin that had Twin to Twin transfusion syndrome in utero. He was the “donor” twin, he had a number of complications at birth from TTTS. Dylan spent 4 months in the NICU. He is a warrior and has been from the time of conception!

He was diagnosed with Cerebral Palsy at 20 months by an MRI. He had numerous delays— spasticity present , tightness, and muscle tone.

Around age 2, we started bracing his thumb because he constantly tucked it into his palm, as well as it looked deformed. It was very tight.
Fast forward 6 years and I’m asking his orthopedic doctor if Botox would be an option for his thumb because it has just gotten worse over the years. (Dylan has had Botox in many places over the years to help stretch/loosen him up and take away some of the muscle tone)

I remember taking Dylan for his X-ray ( common practice before Botox can be administered) & then the doctor asked us to come back to his office. When we did, that’s when they called in Dr. Kevin Little at Cincinnati Children’s hospital to deliver the news. That Dylan, in fact, wasn’t tight in his thumb/arm from his Cerebral Palsy, that it was a rare bone disease called Melorheostosis.

I remember it feeling like a punch in the gut because over the years Dylan has had so many issues with his CP and there are always remedies to make it better. Maybe not take it away, but help with relief. We do therapy—OT & PT, he has had bracing, Botox, baclofen, selective dorsal rhizotomy—spine surgery, He’s had release surgeries, guided growth epiphysis surgery, medications, gait analysis, etc. But now they are telling us THERE IS NOTHING they can do. No treatment, no cure, no medication, etc.
Now I’m supposed to just be okay/content with my son having two incurable diseases— cerebral palsy & melorheostosis! I AM NOT! I’m looking for more.
This kid is Amazing. He takes on obstacles like a champ & I look at him in total amazement at his ability to just keep working harder and harder to be able to walk, go to school, just fit in with his peers while his body just fights against him.

I know there has to be something out there to slow this melo down. In the meantime, I’m just hoping to keep him moving and pain free.
Dylan has trouble with his left arm, his left thumb is tucked inside his palm, his range of motion is not good. He is unable to rotate his arm to get palm up. He cannot lift his left arm at his shoulder joint ( up over his head) Dylan is unsteady on his feet anyway, due to his CP and I’m constantly worried he’s going to trip and try to catch himself further damaging his left arm and aggravate his melo. This bone disease and all the unknowns terrify me. As his bone disease progresses, I know that with the CP also, everyday activities will just become more difficult. He is a very smart boy & wants to be independent! He has dreams of a career and family & living life on his own—dreams of being a “normal” productive member of society. All his life, he has just wanted to blend in a crowd, all the while his diseases are forcing him to stand out. I’m fully aware that these are things he can achieve, I just worry about the bone disease and CP holding him back.