Girl Flies to China for Stem Cell Treatment

Newsquest Media Group Newspapers, July 19, 2006

Read another article about Batten Disease.

Sacha, a five-year-old girl afflicted with the rare Batten Disease, is to have pioneering stem cell surgery in Shenyang, northern China. The procedure will consist of weekly spinal column injections, each comprised of 10 million stem cells, for the duration of one month.

Taken from umbilical cords with the permission of new mothers, blood stem cells will be injected into Sacha's spinal column and will move through the blood stream to the brain, where it is hoped they will start to fix the damage caused by Batten Disease.

The illness has left her incapable of walking or talking without assistance and Sacha’s family is hoping the experimental treatment reverses the effects of the disease which attacks the central nervous system.

Batten disease has no cure and affects one in every 30,000 children that are bon in the UK. Diagnosed last July, Sacha is not expected to live past the age of 12 without treatment.

Sacha’s mother Annette, while researching the disease online, made contact with a Swedish woman whose son had undergone the procedure in China.

She visited her earlier this month and was encouraged by the improvement the boy had made.

"This is the first time I have heard of a child showing signs of improvement anywhere in the world,” said Annette, 37. “They are not huge changes but all his nurses and his mother have noticed a definite improvement which is very exciting and encouraging."

On August 12, Annete will fly out with Sacha for the treatment, returning to the UK a fortnight later when Sacha's father, Neil, arrives.

More trips to China may be necessary for Sacha if the initial treatment proves successful.

Other alternatives included brain surgery in America but Sacha was unable to have the operation after her severity of her seizures increased.

Her stomach was fitted with a tube to allow her mother to give her fluids and medicine as her condition progressively became worse.

Earlier this year Sacha was recognized for her courage in The Argus Achievement Awards.

"Sacha is still taking food orally but only just. Her swallowing mechanism is going and we have to puree everything,” said Annette, "I am feeling really positive about the treatment. I don't feel nervous at the moment but I might do on the plane over there.”

"Sacha isn't going to have brain surgery which I was worried about and this isn't as invasive,” added Sacha’s mother, "I'm looking forward to the future whereas before I just didn't think we had any hope."

Hove businessman Chris funded the treatment by donating £10,000 to Sacha's family after reading of her illness in The Argus.

Annette said: "We are so grateful to Chris. Without him none of this would be possible."