Every few weeks, Derek Carter gets an e-mail that brings a tear to his eye.
Parents around the world have contacted the Carter family seeking more information on Batten’s Disease, a rare, fatal degenerative neurological disorder with no cure.
“It makes you cry because I already know what’s going to happen to them,” Mr. Carter said.
On May 30, 2008, Mr. Carter’s son, Travis, 10, lost his courageous battle against Late Infantile Batten’s disease. But today, thanks to Travis’ legacy, more people understand the devastating effects of childhood Batten’s disease and the continued search for a cure.
Last year, Travis’ parents hoped to return to China for a second stem cell treatment. Travis responded well to his initial treatment in 2006. Derek and Jenny Carter hoped a second treatment would help prolong Travis’ life. But Travis took a turn for the worse. He was taken off life support and fought for two days before succumbing to the ravaging effects of Batten’s disease.
In the months that followed, Travis’ parents took some time to consider a tribute to their son. After consulting Ward 6 Councillor Tom Jackson and city parks staff, the Carters decided to support new, handicapped accessible playground equipment at Meadowlands Park, using the money that was supposed to send Travis to China.
“Out of all the things we could have done, this was the next best thing,” Mr. Carter said.
Three new pieces of accessible equipment have been added to the park, directly across the road from Holy Name of Mary on Meadowlands Boulevard. The new equipment is designed for children who use a wheelchair or youth with limited mobility.
The newly refurbished Meadowlands Community Park was unveiled on May 29 in a special ceremony honouring Travis Carter. Travis’ family joined hundreds of students from Travis’ school, Holy Name of Mary, along with city representatives at the official dedication ceremony.
“This is an emotional day, more emotional than I thought,” said Mr. Carter. When city crews were working to install the new equipment and related landscaping, Mr. Carter visited the site on a daily basis.
“Going to school was Travis’ greatest joy,” Mr. Carter told students and school staff at the dedication ceremony. “You allowed him to be a normal boy, even though it was only for short years.”
Today the Carter family is continuing to help other families deal with the devastating effects of Batten’s disease. The Carters recently helped a 10-year-old Italian boy receive the same stem cell treatment Travis received in 2006. Using their knowledge of the Chinese medical system, the Carters have helped other families explore stem cell therapy, a procedure that is unavailable in North America.
The Carters’ charity, Travis’ Battle, is no longer raising money. But the Carters hope to create a national Canadian foundation for Batten’s Disease that would promote research and awareness. Travis was just the 48th Canadian child to be diagnosed with the disease.
As an infant, Travis lived a normal life. He sat up at six months, said his first words and crawled at nine months and took his first steps shortly after his first birthday.He amazed his parents by assembling a 10-piece shape toy at 18 months. He learned to swing a golf club at age two.
On Canada Day, 2001, Travis endured his first seizure during an afternoon nap. He was rushed to McMaster Children’s hospital and eventually diagnosed with childhood epilepsy. At age four, Travis was diagnosed with Late Infantile Batten’s disease.
Travis’ parents continue to maintain a website at www.travisbattle.com with information on Travis and Batten’s disease.
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