Source: The Expositor
Changes in Jamie Huelin are subtle since she received stem-cell treatment to battle the Batten Disease that's robbing her of life, but the small improvements give her parents hope.
The Brantford five-year-old and her mother, Lori Keeping, returned in late February from China, where Jamie had surgery at a Beijing hospital. The four-hour procedure involved injecting 10 million stem cells into the youngster's brain through a tiny hole in her skull. Doctors, feeling the disease was taking a greater toll on the right side of her body, injected the cells on the left side of the brain. Ten days later, the family was back at its Osborn Avenue home. Doctors told them it could take days, weeks, or even years, to see any benefits from the stem cells.
Then, in April, Jamie's brother, Carson, who also suffers from Batten Disease, was offered the chance to be part of a research project at a U.S. hospital. The family cannot reveal many details about Carson's treatment, including the location of the hospital, partly because of political and ethical controversy surrounding stem-cell treatment in the United States.
But Keeping can say that the three-year-old received stem cells that were injected into his brain through six nickel-sized holes in his skull. The family will travel each month to the States for the next year so that Carson's progress can be monitored.
At home this week, Jamie reclined in a living room chair while being fed from a tube.
Once a feisty toddler, she is now unable to speak, walk or eat and may be blind.
But, since the stem-cell treatment, the right side of Jamie's body seems more relaxed. She has taken small amounts of applesauce and yogurt and is moving her lips more frequently. On good days, Keeping says, her daughter giggles.
The progress is minuscule but, for now, Keeping says it's enough.
"I don't expect her to get up and run around tomorrow. As long as she's comfortable."
Batten Disease, a extremely rare genetic disorder, hasn't yet taken Carson's ability to walk or eat. But Keeping says he has the developmental level of about a 12-month-old and they are concerned that his eyesight may be failing.
"He seems more alert since his treatment. He looks more quickly when we call his name."
"It's all about watching and waiting," said Keeping's husband, Sheldon Huelin. "It's really worrisome. Every time there's a change we wonder, is it the disease or the new stem cells? Once the cells are in there, they're in there to stay, good or bad."
Right now, there is nothing else available to fight Batten's relentless assault - which renders its young victims blind, speechless and paralyzed before it kills them. It is caused by a defective gene - which must be present in both parents - that fails to create an enzyme needed in the brain to help dispose of cellular waste. The waste piles up and kills healthy cells. Most victims die before they reach their teens.
Pioneering stem-cell treatment is having some limited success on Batten patients. The hope is that the brain-infused cells will make enough of the enzyme that's missing in Batten Disease, so that cells throughout the brain will no longer become engorged with unrecycled waste.
Opponents of embryonic stem-cell research and treatment argue that it is a slippery slope to reproductive cloning.
Medical researchers believe that stem-cell therapy has the potential to radically change the treatment of many human diseases, including cancer, Parkinson's, spinal cord injuries and muscle damage.
For Jamie and Carson, there's nothing else.
"What other option did we have?," said Keeping. "We couldn't live with ourselves if we didn't do everything we could."
"It's a shot, a chance," said Huelin. "You just can't sit around and watch them die."
The significant cost of Jamie's treatment - an estimated $50,000 - has been covered by public donations. Tickets for the flight to China for Jamie, Keeping and her mother were given to them by Air Canada. The cost of Carson's treatment, including flights and hotels, are covered by research money.
Keeping said the family still has enough money for a second treatment in China for Jamie in about a year. That could be followed by a third surgery a year later.
In the meantime, Keeping plans to enrol Jamie in Grade 1 at Ryerson Heights, where a nurse will be assigned to take care of her medical needs.
"I know she won't learn anything, but we want to see if she'll be stimulated. We want to try to give her a bit of a normal life."
Carson attends preschool and Huelin said they continue to contribute to a college fund set up for their son when he was born. "We're trying to keep our hopes up."
When the children's hectic treatment schedule slows down, Keeping and Huelin, both employees at factories in Burlington who continue to work full time, want to organize some kind of fundraiser for the Canadian Batten Foundation, which has provided them information and guidance.
Huelin said support for the family has come from across the country, with strangers holding dances and barbecues to raise money for his children.
"We just want to thank everybody. We couldn't do it on our own."
Donations can be sent to: Huelin in Trust (Jamie and Carson), Bank of Nova Scotia, 1791 Lakeshore Rd. W., Mississauga, transit number 61952, account number 0106089. Donations can also be sent to P.O. Box 25084, West Brantford, RPO, Brantford, N3T 6K5, or be made at any branch of the Bank of Nova Scotia.
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