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.

Joe was just 4 years old when he died. He contracted meningitis at one week old and eventually was diagnosed with Angelmans Syndrome, a neuro-genetic disorder that can cause developmental delays, seizures and jerky movements. Those with Angelmans Syndrome appear to have a happy, joyful demeanor. Shortly after the diagnosis, Joe was put on Topiramate, an anticonvulsant to control his seizures. But the medication caused a severe adverse reaction called Stevens Johnson Syndrome (SJS).

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

SJS damaged Joe’s organs and left him vulnerable to numerous infections. His body was frail, but his spirit was strong. His family focused on giving Joe the opportunity to live his short life to its fullest, taking him to the beach and letting him play in the water. Last May, he lost his fight.

Four weeks after Joe died, his family launched the Web site memorial. Its focus is to raise money for a children’s hospice in their town of Cornwall.

Last week, Joe’s family launched a series of videos on YouTube. The videos show the spirit of little Joe and the fund raising efforts of others. The Way family alone has raised more than £28,500 as part of the “children’s hospice South west Precious lives appeal.” Others have helped raise funds as well, making the hospice, which will be named Little Harbour, a reality.

Joe won’t be able to reap the benefits of Little Harbour, but his family has seen the plans for the facility. As Joe’s father said in one video, speaking to a church congregation, “Still, in his own way, he is inspiring people even though he is not here.