Meet Declan: 2021 Family Advocacy Week Champion

Declan is participating in Speak Now for Kids Family Advocacy Week from June 13-18, 2021. Through this event, Declan and his family will discuss his health journey, Cleveland Clinic Children’s Hospital’s role in providing him with necessary health care services, and why the public and our elected officials must invest in the future of patients like Declan.

At birth, Declan was not able to be extubated while in the NICU, so his parents approved a tracheotomy and g-tube placement when he was 8 weeks old.

“We did this knowing our lives would be forever changed, and that his future would be very medically complex,” says Jessica, Declan’s mother. “But we wanted to give him a chance and see what happened.”

Soon after getting the support he needed, Declan started thriving, growing, staying awake more and really showing his personality. At 7 months old, Declan received a diagnosis; X-linked myotubular myopathy (MTM), a rare orphan genetic disease with no treatment, that primarily affects skeletal muscles.

“We were told to expect him to only live a year, even though he was doing so well,” says Jessica. “But we were not giving up on him.”

Declan and his parents lived in the hospital for the first 20 months of his life, first in the NICU and then the Cleveland Children's Hospital rehab facility. This helped his parents understand how to better care for him.

Now at 9 years old, Declan’s care team includes 17 different specialists and a variety of treatments. Declan is medically stable and has a B+ average in school. He loves playing on his iPad, watching YouTube videos and learning about dinosaurs.

“We've kept him healthy and thriving for much longer than ever expected, and there is no slowing down now,” says Jessica.

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