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Help save my daughter’s finger
A CHRISTCHURCH couple are appealing for help with treatment for their baby daughter after she was diagnosed with a rare blood vessel defect.
Nine-month-old Ryah Airey has high-flow extremity arterioven-ous malformation (AVM), an abnormality of the arteries and veins.
The extremely rare condition – affecting three in a million – was diagnosed at Great Ormond Street Hospital when Ryah was just a few months old.
Specialists have recommended the youngster has the affected finger on her left hand amputated as the best course of treatment but her anxious parents, Martyn and Plamena, want their daughter to be treated with embolisation – the usual treatment for the condition – before resorting to such extreme measures.
The couple, who live in Mudeford, have booked Ryah in for treatment in New York in March, after contacting specialists across the world for advice on alternative treatments.
Martyn said: “The doctor we found in New York, who we sent Ryah’s angiogram to, said there is an 80 per cent chance of success with embolisation and a five per cent risk, which would be no less than what Great Ormond Street want to do now.
“Great Ormond Street said amputation was the only option because of the complexity of her situation.
“But with amputation there is no guarantee it will stop it.
“It’s not promising us anything. It’s too extreme as the first option.
“Medicine is changing so fast, we don’t know when the next massive breakthrough will happen.
“We’re not trying to have a witch hunt on the NHS but we truly believe this is worth trying before amputation.”
The couple, frustrated by delays regarding NHS funding, say the situation has become more urgent since the AVM spread along Ryah’s hand.
Plamena added: “Great Ormond Street still say amputation is the only option so we have been trying to apply for overseas funding.
“But it’s so frustrating with the delays. I feel like we are being pushed from pillar to post with little result.
“It would be so helpful if someone could help us with the process or if someone could give us some advice on charities, or organisations which can help us get the approval needed to fund the overseas treatment.
“We’re just doing what any parents would do – getting a second opinion.
“We want the best treatment and quality of life for our daughter.”
If you can help the family contact Martyn on mairey@virgin media.com