Hartlepool teenager with rare condition travels to USA for drug trial

Georgia Hart. Picture by FRANK REID

Georgia Hart. Picture by FRANK REID

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A Hartlepool teenager with a rare degenerative condition travels to America this weekend to help trial a new drug that could save her life.

Eighteen-year-old Georgia Hart was diagnosed with the potentially life-threatening condition Freidreich’s Ataxia (FA), which attacks and damages the central nervous system, when she was 15.

Georgia Hart (centre) with (left to right) Harry Fewster-Smith, Evie McCabe, Jersey McCabe-Coull and James Fewster-Smith. Picture by FRANK REID

Georgia Hart (centre) with (left to right) Harry Fewster-Smith, Evie McCabe, Jersey McCabe-Coull and James Fewster-Smith. Picture by FRANK REID

It affects Georgia’s balance and mobility and the inherited disease affects just one in 50,000 people.

She also suffers from a painful curvature of the spine, severe fatigue, and has a hear condition.

Now after three years of tests, Georgia has secured a place on a clinical trial for a new drug which could slow down the progression of the disease and improve her quality of life.

She is the only FA patient from the UK believed to be taking part in the trials.

I’m nervous, but excited to do it

Georgia Hart

Georgia, who is taking a year out of her studies after completing her A-levels, said: “I’m nervous, but excited to do it.”

But the trial will entail numerous trips across the Atlantic over the next six months to the only specialist centre of excellence for the condition, in Philadelphia. To help her family and friends are kickstarting the Save a Hart fundraising campaign which previously raised around £27,000.

Georgia’s mum Bev Hart said: “Georgia has been going to the hospital in Philadelphia once a year for the last three years to try to secure a place on the trials if and when one became available. She went for screening last week and has passed all the assessment and starts the drug next week.

“It is hoped it slows down the progression aiming towards finding a cure for FA.”

Georgia Hart. Picture by FRANK REID

Georgia Hart. Picture by FRANK REID

Georgia, of Serpentine Road, added: “The drug is meant to improve my balance and walking.”

It comes in the form of an injection. Georgia will take part in part of the trials at home in Hartlepool and other times she will need to stay in America for observation.

David Lynch, of the Children’s Hospital of Philadelphia (CHOP), who is one of the leaders of the drug trials says many have shown some progress at improving symptoms or slowing the disease progression.

He said: “Each of these trials is a shot on goal, and they are reasonably good shots on goal,” says Mr Lynch of the FA drug trials going on at CHOP and elsewhere. Each of them, if it’s not successful, is designed to inform on why and do better the next time.”

Georgia Hart. Picture by FRANK REID

Georgia Hart. Picture by FRANK REID

How you can help

Youngsters of a Hartlepool disability support group and their families are organising a sponsored event to boost Georgia’s appeal.

Members of 1 Heart 1 Mind 1 Future are putting aside their own difficulties to help kick start the Save a Hart fundraising campaign as she begins drug trials in America.

Her family are trying to raise around £25,000 to fund the regular trips to the only centre of excellence in the world in Philadelphia during the next six months.

It is their way of saying thank you to Georgia, 18, who has previously raised money for and supported the parent-led group for families of children with additional needs.

They will lead a sponsored bike ride and walk on the Headland on Monday, October 26, at 10am along the Headland.

Georgia Hart. Picture by FRANK REID

Georgia Hart. Picture by FRANK REID

Christine Fewster, of the group, whose two children Harry and James, will be taking part, said: “We just wanted to do something for Georgia and Bev because they do so much for everybody else.

“We would like to make it a big open community event and would love other families to get involved.
“Also if any businesses would like to come on board we would be really grateful.”

Georgia’s mum Bev Hart said: “I want to say how grateful I am. I think it’s amazing that these parents and children some with challenges much greater than Georgia want to do something for us.

“There aren’t any words really.”

Georgia added: “I really appreciate it and couldn’t believe it when they told me about it.

“It is just a lovely gesture.”

Georgia’s family will also be organising events and fundraising.

Supporters can donate through the website www.shareagift.com/Pages1323
The campaign is also on Facebook under Save A Hart.