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.

SOURCE: Stevens Johnson Syndrome › SJS victim’s family helps raise funds for children’s hospice

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.

Joe was taken to the hospital where doctors watched as the mysterious symptoms appeared and the little boy’s health deteriorated. He was eventually diagnosed with SJS, a rare but life-threatening adverse reaction to drugs – such as anti-seizure drugs – that causes the skin and mucus membranes (eyes, mouth, genitals) to blister and peel away in sheets.

“He had experienced bad health throughout his short life, but nothing compares to the horror of SJS,” his family writes.

Details of his story and photos of the beautiful boy are shared on the site, and are much too difficult for this mother to type. Joe did pull through, but his health was badly compromised. He was put on a home ventilation device and his health increasingly deteriorated.

Joe’s family understood that their time with their young son was limited, but they did their best to provide the best at-home care for Joe in order to limit his hospital visits. He was too sick to make it to Little Bridge House, the children’s hospice in Devon, something that deeply affected the family.

After a two-year battle, Joe’s little body finally gave out. He died May 7, 2008, just four months before his 5th birthday. Shortly after, his family published the Web site in his memory, calling for donations to fund a children’s hospice in their town of Cornwall. So far, more than 30,000 pounds has been raised for the Children’s Hospice South West center, called Little Harbour.

“Supporters pondering the plans will see a slate roof, Cornish stone walls, and a tower reminiscent of the many lighthouses surrounding the Plymouth and Cornish coastline, and designed to reinforce the hospice’s Cornwall and Plymouth connections. They will also discover the special children’s bedrooms, accommodation for parents and siblings, a wide range of play and therapy facilities – including a messy play area, a Jacuzzi, and a multi-sensory room – and a homely family kitchen and living room which are all designed to help create a comfortable and wonderfully caring community,” the site details.

Donations can be made online at www.joeway.co.uk.

“It is critical to ensure life limited children get this support in Cornwall,” writes his family.

SOURCE: Stevens Johnson Syndrome › Family raises funds for children’s hospice after son dies from SJS