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.
News Tagged ‘Cornwall’
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.