Donations help send toddler with rare condition for treatment

By JEN LAVERY
Published on 02/02/2013 15:47

A TODDLER who spent the first seven weeks of her life in intensive care fighting an extremely rare brain condition has been given fresh hope after undergoing controversial stem cell treatment.

Chloe Wilson, who will be two this month, was due to travel to a clinic in China, only for mum Kayleigh Martin to be told at the 11th hour that the practice had been banned there.

But bosses instead arranged for the family to visit Thailand, where Chloe underwent treatment.

The youngster was born with septo-optic dysplasia, a rare condition which means her pituitary gland has not developed properly.

As a result, her optic nerve is underdeveloped, leaving her with hormone deficiencies and very little vision. She also suffers from hypotonia – low muscle tone – down the right side of her body.

Kayleigh, along with Chloe’s dad Scott Wilson, both 22, set a fundraising target of £10,000 in the hope of taking her to the Chinese city of Guangzhou to undergo a stem cell treatment not available in the UK.

The family were amazed when a flood of donations, mainly from strangers, saw them raise almost £25,000.

But less than a week before they were due to leave, nursery assistant Kayleigh was contacted by the clinic to inform her that they would have to travel to Bangkok instead.

Kayleigh, who lives in Forrester, said: “There is a huge difference of opinion over the treatment. Some argue it is unregulated and untested, but we have spoken to other families who have seen a significant improvement in their

children as a result. Then we were told that the authorities in China had decided to suspend the practice.

“It was a real shock and my dad even started to wonder if we might have been the victims of a scam. But the clinic said they would arrange for us to go to Bangkok, at no extra cost, so we decided we had to at least try.

“I have to admit I was very relieved when there was actually someone there to meet us at the airport.”

Along with having stem cells from umbilical cords dripped into her bloodstream three times a week for three-and-a-half weeks, Chloe was given intensive sessions of physio and hydrotherapy to help build up the strength on her right side.

Kayleigh said: “We could see the difference in a matter of days. Chloe can now stand on two feet as long as someone holds her hands, and is gaining more confidence with her right hand all the time.

“The specialist in Bangkok thinks her brain has a hard time recognising that her right side is actually there, so we’ve been doing lots of stretching exercises and massages to stimulate the nerves and muscles on that side.”

The family now face an anxious wait to tell if the treatment has worked.

Kayleigh explained: “It can take up to a year for the stem cells to develop enough to really take effect. In the meantime, we’re encouraging them by using light therapy. We have lots of different coloured, flashing lights that we turn on and try to get Chloe to watch.

“She’s very independent, and as with any child her age, it can be difficult to make her do anything she doesn’t want to, so I make it as fun and playful as I can.”