News Tagged ‘Little Harbour’

SJS victim’s family helps raise funds for children’s hospice

Joe Way may have passed away in May, but he leaves behind a legacy that will touch lives in his community of Cornwall, England, forever.

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Family raises funds for children’s hospice after son dies from SJS

Sometimes we forget how lucky we are.

Today I read the story of Joe Way of England. He was born just two and a half months before my son, on September 5, 2003. Though an ocean apart, he was not unlike my son. He was born healthy to a loving family. But at a week old, he contracted meningitis and eventually was diagnosed with Angelmans syndrome, a neuro-genetic disorder that can cause developmental delays, seizures and jerky movements. It is so named because those who suffer from the condition appear to have a happy, joyful demeanor. In order to control the seizures, Joe was put on Topiramate, an anticonvulsant.

“We were warned about the usual side effects – loss of appetite, liver problems, etc., but not SJS (Stevens Johnson Syndrome),” his family writes in their online journal Joe Way Inspired.

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