Parents are prepared to try stem cell treatment for their children and travel to China even though they know that it may not work, writes CLAIRE O'CONNELL
WHEN DAKOTA Clarke (3) from Belfast wants her dummy, she walks straight across the room and picks it up. It may seem like an unremarkable action, but it’s a cause for celebration for her parents. Dakota, or Cody, has septo-optic dysplasia (SOD), a condition that affects the optic nerve and limits sight to light differentiation.
Keen to help their daughter, Cody’s parents found information through the internet about stem cell transplants on offer through Chinese company Beike Biotech. They say they were under no illusions when they made the decision to go.
“We went over with our eyes wide open, we were under no misconception it was going to be a miracle,” says her father Darren. “Beike made it clear from the first contact that this might not work. They said you might come over here, spend this money and go home without a single thing changed.”
A year of fundraising later, the family had the required £30,000 and travelled to a hospital in China, where Cody received numerous transplants of stem cells harvested from donated cord blood.
Although medical tests indicated no improvement in Cody’s condition, her parents say that she can now point to and find objects, which she was previously unable to do. Meanwhile, a bowel problem she has had since birth has also cleared up.
However, her father is angry about the recent BBC Spotlight documentary Stem Cell Tourists that tracked his family and that of Megan Traynor (6), also from Belfast, as they made their journeys to China earlier this year.
In particular, Clarke counters the programme’s suggestions that Cody’s progress is down to a placebo effect. “I can understand that could be the case with adults but not with a child aged two. She wouldn’t understand that mammy and daddy want me to feel better so I am,” he says.
Currently, nine-month old Gretta Kieran Cullen from Termonfeckin in Louth is in China undergoing a series of stem cell transplants with Beike for the same eye condition. Her treatment is reported to cost about €60,000.
“We are fully aware that people warn against doing this because of the cost and the risk that it will not do wonders for Gretta,” the infant’s mother, Maria, told The Irish Times before leaving Ireland last month.
“We know that there is a chance that it will make no difference at all, but that’s a risk we are willing to take. We want to do everything we can to give our baby the best chance at life she can have.”
Meanwhile, Pamela Horgan from Kilkenny has just started to raise the €35,000 needed for her two-year-old son Sam to receive a stem cell transplant through Beike.
When he was three months old, Sam had a bleed in his brain and stopped breathing, recalls Horgan. Over the next several months, she and her partner David were told several times to prepare for the worst as Sam battled further bleeds and infections.
He came through but is now blind and has difficulty with motor skills. Horgan scoured the internet for information and applied to Beike, which have accepted Sam for treatment. The family is now running the Baby Sam Appeal to raise funds.
“I’m going in with an open mind,” says the mother of four. “I’m not saying he will walk and talk, but there’s hope there as well.”
So far she has not discussed the approach with doctors here. “He is my child and I get the final say. It’s a chance I have to take for Sam – if it does him good then so be it, and if not then I did my best for him.”