Surgery hope for Imogen Imprimare Email
Optic Nerve Hypoplasia
Vineri, 17 Iulie 2009 14:30
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Source: Thisissomerset  

Little Imogen James's parents hope their daughter will finally be able to see them after the two-year-old almost died at birth and was left almost totally blind.

Nick, 30, and Lauren, 25, James are raising thousands of pounds which will allow Imogen to undergo pioneering stem-cell surgery at a clinic in China.

Imogen almost died at birth and spent 10 days in the special-care unit at Yeovil District Hospital. She survived against the odds but was diagnosed with optic nerve hypoplasia, which prevents this nerve from forming completely while the baby's in the womb. She is almost entirely blind and also has reduced mobility as a result of low muscle tone.

Imogen's parents, of Yeovil, have been told by doctors in the UK there was no treatment that could help. However, Mr and Mrs James found hope for a brighter future for their daughter after learning about a clinic in China that is pioneering stem-cell treatment.

Inspired by the case of Northern Ireland toddler Dakota Clarke, who they visited in April and who is showing signs of improved faculties after surgery at the Chinese centre, they have launched a campaign to raise the nearly £30,000 needed for the treatment.

They are already nearly halfway towards their target and this week booked their flights to China for December. They will spend a month with medical firm Beike Biotechnology, whose treatment centre is at Zhejiang Xiaoshan Hospital in Hangzhou. During six treatments, stem cells extracted from donated umbilical cord blood will be inserted into Imogen's head. The surgery may allow her to see and make it possible for her to walk and to stand on her own.

Mr James said: "This has given us hope, because even a one per cent increase in her vision would improve her standard of life tremendously. The authorities in the UK say it does not fully cure the condition, but we went to see Dakota in Northern Ireland and she now has some vision, and there is a teenager in America that has now passed her driving test after receiving the treatment."

As the world leader in stem-cell techniques, China has been mired in controversy over claims of lax ethical standards regulating research. But the family said they were prepared to do whatever it took to improve Imogen's quality of life.

Mr James, an aircraft engineer with the Royal Navy, said: "When we first found out about the possibility of stem-cell treatment, we wanted to find out more but were still undecided. But after seeing the improvements in Dakota we knew this was definitely the way ahead and we made our decision at the end of April."

About six months ago the family moved to Scotland, but they are returning to Yeovil to live in Houndstone in a couple of weeks' time.

Mr James, who will again be based at RNAS Yeovilton, said the main motivation for the family's return was the care available for Imogen and that it was likely he would remain at the airbase for the rest of his career. He said: "Imogen used to attend the Balidon centre in Yeovil for special-needs children, but there is no provision like that here. She came on so much when she attended and has really missed it, and we know we are doing the right thing in coming back," he said.

Their first fundraising event locally will see local band Storm in a gig at the Crown & Victoria in Tintinhull on Sunday, September 20. Collection tubs will be around the town, and Mr James is planning to run the half-marathon at the Eden Project in October. Several other events are in the pipeline.

"We have come up with a few different ideas to raise the money and have had a lot of support for our fundraising campaign in Scotland, and hope to be able to continue this when we return to Yeovil," he said.

The couple also have a son called Dylan, who is eight months old and was born healthy. He has already developed well beyond his elder sister's capabilities, as she finds it impossible to crawl without assistance. Imogen will celebrate her third birthday on Friday, July 28.

Mrs James, who left her job in the navy to look after Imogen, said: "Although the operation is not some miracle cure, it could be the difference between Imogen reading Braille or large print.

"It will cost a huge amount of money, so any donation, large or small, will make a massive difference to Imogen's life."

For more information, visit www.helpimogensee.org. Donations can also be made through the Royal Bank of Scotland fundraising account, sort code 83-15-15 and account number 00315310.

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