November 16, 2005
Fighting for Travis
By Christine Cox
The Hamilton Spectator
(Nov 16, 2005)
The phone call from a New York hospital felt like a kick in the stomach to Derek and Jenny Carter.
A doctor told them that their son, Travis, is no longer being considered for the groundbreaking surgical procedure they believe is his only hope of survival.
Travis is seven years old and has a rare degenerative disorder called Batten's disease. He's in a wheelchair, he has almost no speech and very little vision.
Just days ago, he was a candidate for pioneering gene transfer surgery at the Weill Medical College at Cornell University. He had a tentative treatment date of Dec. 6.
The surgery would involve drilling holes into Travis's brain to deliver gene therapy.
But on Monday, his parents learned the hospital will not treat him. They've been told that a neurosurgical team concluded that it was too high risk for their son to undergo the procedure.
The Carters see it as a death sentence for their child. They're devastated.
"This was the only hope that he had out there," Jenny said. "I'm numb right now."
She said children with the disease don't reach their teens.
The west Mountain family has been on an emotional roller-coaster since Travis was diagnosed in October 2002. This time last year, he was next on the list for surgery.
Three children had been successfully treated but a fourth child died a few weeks after her operation, and the clinical trial was put on hold temporarily.
Last spring, Travis was back on the list again. Four dates were set for treatment, but each time, Cornell postponed it.
"How could they keep promising this to us?" Derek asked, his face etched with frustration. "This isn't a free trip to California -- this is our son's life."
The Carters are part of a small group of families who have raised roughly $6 million for research and treatment for Batten's disease through an organization called Nathan's Battle Foundation.
Thanks to overwhelming support from Hamilton, the Carters themselves have raised about $309,000.
"We put our hearts and souls into raising this money. Essentially, we put our lives on hold," Derek said.
They feel they have a responsibility to the community, as well as to their son, to keep fighting for his treatment. They say children in a more advanced stage of the disease were treated successfully.
Last spring, Travis could still walk on a treadmill, with support.
He can no longer do that, but he can still do standing exercises when supported under the arms. He can still take food by mouth.
Travis is a full-time Grade 2 student at Holy Name of Mary School in Ancaster and enjoys classes. His mother says he's healthy, happy and understands everything.
His parents are confident that Travis would survive the surgery, but they've always been willing to sign any document acknowledging the risks. They suspect he was dropped as a candidate for treatment because the doctors want to protect their success rate and their funding by selecting easier cases than Travis.
But the Carters are not giving up. They are consulting lawyers about possible legal action, with the goal of compelling the doctors to treat Travis.
"We are desperate for help from anyone in the community that may have an idea as to how we can proceed," Derek said yesterday.
He and his wife hope the public will lobby the doctors involved at Weill Cornell.
More information is available at www.travisbattle.com or by phoning 1-800-546-7682.
ccox@thespec.com
905-526-3323
