A mother is appealing for help to raise £70,000 so her daughter can have potentially life-changing surgery in Poland.
Lucy Campbell’s six-year-old daughter Hallie is the only female in the UK to have been diagnosed with a rare genetic disorder.
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Named aromatic amino acid decarboxylase deficiency (AADCd), it causes severe developmental delays, weak muscle tone, involuntary movement of arms and legs and painful seizures.
Hallie was diagnosed with the life-limiting condition when she was just six months old and cannot walk, talk or sit up.
She has had several operations during her short life and takes a cocktail of medications three times a day.
Lucy, who lives in Hindley, said: “She is basically just trapped in her body. She has the most amazing smile. She is such a happy little girl, but she is trapped and can’t do things other little girls her age can do.”
AADCd is an inherited condition - Lucy and Hallie’s father Andrew Hill both carry a faulty gene, but her nine-year-old sister Macy does not have the disorder.
It is so rare that only around 130 people worldwide have the condition, including five in the UK, with Hallie being the only female.
Most people with AADCd do not reach adulthood, with three children each year dying from the disease.
But new gene therapy surgery has now become available, which could be successful in preventing painful seizures - known as eye crises - which Hallie has every couple of days, sometimes lasting for hours. Her body becomes “as stiff as a board” and it can lead to hospitalisation.
However, it is not available on the NHS as it involves expensive brain surgery which would cost £1m per patient.
A medical centre in Poland has offered to treat Hallie at the subsidised price of £70,000, but the NHS turned down a request from her family to pay for it.
Now they face a race against time as they try to raise the money themselves, with a provisional date for the procedure to be carried out in October.
Lucy says the results from other patients have been “amazing”, with children no longer having the crises and many of them being able to use their movements more purposefully.
She said: “Having no crises would be the most important thing for us, for her not to be in that awful pain.
“It’s awful to watch. She is completely stiff, she is like a board, her hands are in fists and her teeth are grinding. It’s so awful and distressing to watch.
“That would be the main thing. Anything else would be an added bonus.”
Hallie’s family has launched a fund-raising appeal for the cost of the surgery, with more than £7,000 donated in just a few days.
Lucy said: “We are trying to raise the money so she can have this opportunity. We have set up a Just Giving page and we are climbing Snowdon on September 7. We are going to push Hallie to the top of Snowdon and see if we can raise funds that way.”
She thanked everyone who has donated so far and encouraged people to get involved with fund-raising, such as by suggesting ways they could boost the appeal.
Make a donation to the fund here