How GOSH St Albans poster girl fought back instead of fading away
- Credit: Archant
For proud parents Lyn and Andy Farrugia, their 10-year-old daughter Gabriella was always one in a million.
But when she became one of only three in a million, their lives turned upside down and the future for their lively and previously happy daughter looked bleak.
This week Gabriella who lives with her parents and younger brother Jo, eight, in Marshalswick became a poster girl for Great Ormond Street Hospital (GOSH) where she has spent the past three months battling the extremely rare condition Juvenile Dermatomyositis known as JDM.
Although she can now come home for short periods, she will have to return regularly for treatment and is still undergoing chemotherapy.
A chronic auto-immune disease, JDM affects roughly three children in a million and effectively means the child’s immune system attacks the body.
It causes severe muscle weakness and a rash, both of which had developed in Gabriella, a pupil at Wheatfields Junior School, during the summer and left untreated can leave youngsters paralysed. At one time there was a 40 per cent fatality rate but while it is now down to one per cent, JDM cannot be eradicated and the best hope for patients is that it goes into remission.
When Gabriella first started showing the symptoms of JDM, her parents thought it might just be growing pains but her health continued to deteriorate.
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Within weeks she was unable to brush her hair, lift a toothbrush or swallow food and one night she told her mother, “I am fading away”.
Gabriella’s grandmother, former St Albans councillor and Mayoress Agnes Hill, saw her deteriorate in front of her eyes. She went to pick her granddaughter up from school one day and Gabriella told her that she was sorry but she couldn’t put her coat on or do her shoes up. “When we got home, she said she had to go to bed,” Agnes said.
Fortunately Gabriella’s GP realised that she was suffering from far more than just growing pains and referred her immediately to Watford General Hospital.
Within hours she was admitted to GOSH which treats more than half of all children with JDM and where she was quickly diagnosed
The cause of JDM is unknown but effectively the child’s immune system attacks the body.
Agnes said: “Her parents reckon that she must have had a virus at some point and the antibodies fighting the virus carried on fighting her body.”
She praised her granddaughter for her bravery during her months of treatment which involved being fed through a tube because she could not swallow, and using a wheelchair.
Lyn has been by her bedside constantly and has had to temporarily give up her job teaching at Sandridge JMI.
Agnes said: “Gabriella has been absolutely amazing. There were times when she was absolutely terrified of the treatment such as when she has had to have a muscle biopsy but she has been unbelievably stoical about it all.
“It is a terrifying illness but she is not alone in suffering from it.”
This week Gabriella’s story featured in both a national newspaper and the London Evening Standard as part of a Christmas campaign by GOSH not only to raise awareness of JDM but also to enable the hospital to continue research into it.
The appeal, which ends next month, has already broken through the £2 million mark and in addition the money will be used to equip a brand-new heart unit and ground-breaking work in the field of children’s palliative care.
Donations to the campaign, Give to GOSH, will be matched by the Government, doubling the amount. To donate click here.