THE mother of a teenager who has gone from fit and healthy to severely disabled has spoken of her daughter's fight for treatment.

Jade Wormald-Gadd, 14, from Newton Hall, near Durham, was diagnosed with the rare Ehlers-Danlos syndrome (EDS) in August, after years of health problems.

The genetic condition affects every system in the body, including victims' mobility.

Jade has suffered countless dislocations and become increasingly wheelchair-reliant.

Her mother, Roz, said the family has had to fight every step of the way for decent treatment for Jade.

She said they have been met with clinicians with little knowledge of EDS and one who seemed to doubt Jade's symptoms.

The family's plight has been made all the more heartbreaking because Jade's father, Tony, is battling cancer and only recently finished a course of treatment.

Mrs Gadd said: "Jade has had a bad time and, at the moment, my main concern is getting as much help for her as I can.

"There have been elements of the treatment she has been given that have been a cause for concern and I would hate to think of any other families going through what we have gone through.

"There is very little help for people in this situation."

Jade's parents have raised concerns with health bosses about the teenager's treatment.

A spokesman for University Hospital of North Durham said: "Clinical staff work extremely hard to provide professional and personal care for our patients at all times, however, there are some conditions which require treatment at specialist regional centres.

"We cannot discuss the details of an individual patient’s care, and the issues raised are now being handled by our patient experience team."

Jade has been seen by EDS specialists in Bath, where the family was told her condition was too severe to be treated in group therapy and she will need one-on-one treatment, a date for which has not yet been set.

The family is also waiting for adaptations to their home which will make Jade's life easier.

Mrs Gadd added: "She is still declining. She can't walk, but she is managing her pain.

"We don't have a long-term prognosis, but we know this will be with Jade for all her life, although it won't affect her life-span.

"It's incredible that she still manages to stay so happy and positive, we're really proud of her."

Mrs Gadd is urging people to sign an e-petition calling on the Government to fund research into EDS.

To sign the petition, search change.org for #EDS