Pioneering stem cell treatment gives family a glimmer of hope

9:02am Tuesday 19th September 2006

Sacha Skinner will be six years old this week.

There will be toys and birthday cake but most importantly this year, there will be hope for the girl from Brighton.

Sacha has Batten Disease, a degenerative brain disorder which has left her unable to communicate and made it difficult for her to move around.

Her mother Annette Dacosta recalled the hell she went through when her little girl was diagnosed just over a year ago.

She said: "All I could think about was that my little girl was going to die. I was going to lose her. That's what Batten's is, it is a death sentence.

"I cried and cried but after a month of despair I started to get mobilised. Her dad and I started to read up on it and find ways to help her, to try and slow the disease down."

Batten Disease is very rare, with only about 30 children in the UK affected by it. This means resources for research are very limited.

Mrs Dacosta said: "We had to learn everything from scratch.

Talk to parents of other Batten's children and find out what had worked for them."

The search for a lifeline has taken the family to Switzerland, Australia, America and most recently, China.

At a Shenyang hospital, Sacha had pioneering stem-cell treatment. She is only the third child with Batten's in the world to undergo the procedure.

Sacha spent a month in China where she had acupuncture, daily physiotherapy and five stem-cell injections. Stem cells were harvested from umbilical cords and injected directly into Sacha's spine.

Mrs Dacosta said: "I have been reading up on stem cells and they are like magic. They gravitate to areas where there is damage and start a repair job.

"We are really positive at the moment. We have seen small changes in Sacha. She stopped dribbling for a while in China and she is more alert and more vocal since she came home.

"She is lifting her arms and reaching for things. Before she was very weak. The school has seen the same signs, I know I am not imagining it."

Mrs Dacosta, of Firle Road, Brighton, is in touch with people across the world who have been treated with stem-cell injections.

She said: "It is still early days and I know from talking to others that the changes can take months to appear."

Mrs Dacosta knows the treatment is experimental but says she has to do something.

She said: "Sacha's health is the most important thing to me.

I wouldn't put her through anything that would hurt her.

"But if I don't do something she will die. I have to do everything I can to prevent it, to halt it, to keep her as well as possible for as long as possible. I can't just let my little girl fade away."

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