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Seven year old Ashton is adored by his four siblings and parents Shaun and Denise, who describe him as a beautiful spirit. Ashton loves dogs, playing Marbleworks, watching his favorite TV shows and taking the bus with his dad, which he does every weekend. Often they hit the mall for French fries!
After being born at 36 weeks via cesarean section, this Tiny Light was observed turning blue and kept in the NICU for two days. Doctors were unable to make a diagnosis and when Ashton came home, he continued having problems, including reflux, constipation and feeding issues. At one year of age he was just 15 pounds.
Following extensive testing, Ashton was diagnosed with cardio-facio-cutaneous syndrome or CFCS, a rare condition affecting just 150 people worldwide. He also has global developmental delay, autism spectrum and seizures requiring 24 hour monitoring. Ashton is sensitive to light, touch and sound. He's receiving physiotherapy to help him walk, but for now requires a wheelchair. He weighs just 22 pounds.
Ashton's parents say they're fortunate to be supported by other parents of children with CFCS. They're optimistic this Tiny Light will eventually be semi-independent and live a happy and healthy long life.
Written by Catherine Urquhart
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