Dunedin boy to undergo experimental treatment

A Dunedin mother wants to give her 2-year-old son the chance of a better life by taking him to the United States and Mexico for an umbilical cord stem cell transplant.

Shirley Turner said her son, Caleb, had cerebral palsy, for which there was no cure.

However, a US-based doctor had been having a lot of success with stem cell transplants and all those who had undergone the procedure had gained something from it, Mrs Turner said.

Caleb could have up to 50 seizures a day as a result of his severe cerebral palsy, and those were just the ones she saw, she said.

Caleb cannot walk, talk, or even roll over and sometimes he chokes while he is eating.

The outcome of the $15,000 transplant, which will use stem cells from donated umbilical cord blood, was unknown, but at worst it would do no harm, Mrs Turner said.

"The thing I'm really hoping is it will stop his seizures. Anything after that would be a bonus.

"Children who have had it done in the US have all improved and had a better quality of life."

Doctors have told her if Caleb was still having seizures by the end of the year, he was likely to suffer more brain damage.

"Time is not on our side anymore. If we don't have enough money we will have to take out a loan and keep fundraising when we get back."

She has estimated the trip would cost the family $35,000-$40,000, and they planned to spend the next six weeks before they leave fundraising.

Cerebral Palsy Society of New Zealand general manager Harvey Brunt said early indications were that the treatment could make a significant difference, but that was not yet backed up by research.

"It could be very exciting."

A large cerebral palsy conference was being held in Sydney next year and he was looking forward to hearing what developments there had been in treatments for the disorder.

Dr Jim Faed, haematologist and acting head of pathology at the University of Otago, said a lot of research was under way into the use of stem cells.

"It is still very much an experimental treatment. I fully understand parents wanting the best for their children, but at this time we can't say what the best will be. It is still a very grey area."

Umbilical cord stem cells were considered adult stem cells and were unrelated to embryonic stem cells, Dr Faed said.

Caleb developed cerebral palsy after suffering a massive brain bleed just days after birth.

Nobody knew whether he would survive but as it turned out Caleb "was a wee battler", Mrs Turner said.

During his first year of life he had seven brain operations to relieve pressure on his brain due to a build-up of fluid.

The cerebral palsy society estimates about 7000 people in New Zealand have some degree of cerebral palsy, ranging from mild to severe. It does not get worse with age.