A SIX-YEAR-OLD girl with a very rare genetic disorder is making an “incredible recovery” after having major brain surgery that could change her life.
Hallie Campbell, who lives in Hindley, was diagnosed with AADC (Aromatic l-amino acid decarboxylase) deficiency at the age of six months.
The life-limiting disorder, which has been described as a form of Parkinson’s disease for children, affects the way signals are passed between certain cells in the nervous system.
There are only around 130 children in the world that have AADC deficiency.
After more than £77,000 was raised through a crowdfunding appeal, Hallie went to Poland and had gene replacement therapy treatment to stop her getting eye crises, which is the painful seizures she had every couple of days and lasted for hours.
Lucy and Hallie
Hallie in her hospital bed
Hallie's mum Lucy, 28, said: “Hallie’s surgery was a big success and she is making an incredible recovery.
“It’s too early to say how she has responded really but we have noticed her big blue eyes!
“Her eyes seem much bigger now and she no longer has drooping of the eyelids.
“We felt so relieved that the surgery was a success but we had a mixture of emotions as she had a few difficulties with breathing straight after surgery.
"This was quite normal after being sedated for seven hours.
“We started to get smiles two days after the surgery and the next day she was awake most of the day smiling and laughing.
“We know it will get slightly worse before it gets better as after around four weeks Hallie will begin to get a lot of involuntary movements and her medicines will need to be reduced.
“Hallie will need intense physiotherapy to maximise her potential post surgery and we will have a lot of follow up appointments at Great Ormond Street in London.
“We can’t wait to see what the future has in store for Hallie!”
A brain scan two days after the operation, which took place on Tuesday, November 5, found that the surgery went as planned.
Hallie had her last eye crisis last week and doctors say it may be her last one.
Lucy has also praised the generosity of residents who have supported the appeal in aid of her daughter, which was named Hope for Hallie.
From left; Professor Zabek, Lucy, Lucy's daughter Macy, Lucy's partner Barry and Professor Bankiewicz. Both Professors performed Hallie's surgery
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“There aren’t enough words to say how truly grateful we are for everyone’s financial and emotional support,” Lucy said.
“We are just bursting with gratitude.
“We have made so many new lifelong friends who have supported us through the past two months fundraising.
“Who knows, one day Hallie may be able to thank you all herself!
“The whole campaign was about hope for Hallie and now there really is hope for Hallie.
“We will never forget this journey and can’t wait to update you all on Hallie’s progress.”
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