Mother’s campaign drive to get gene therapy for her son
By Maurice Garvey
A MOTHER has started a campaign in a desperate attempt to provide her son with some semblance of a proper life.
Luke Cross (4) from Clondalkin is the only person in Ireland to be diagnosed with AADC (aromatic amino acid decarboxylase deficiency) – a rare brain disorder which affects the body’s ability to produce neurotransmitters, dopamine and serotonin.
Emma Styles with her son Luke.
It is an extremely life-limiting condition. Luke is wheelchair bound, fed through a peg, requires round the clock care, suffers weekly seizures, and has to take 21 daily medications.
“You have to get on with it and keep going, there is no choice – you would do anything for your kid,” said Emma Styles, Luke’s mother.
Grange View Road resident Emma, who is also mother to MJ (6), and separated from the children’s father, has started a fundraising drive to get Luke to Poland for gene therapy.
Emma and Luke previously appeared in The Echo in 2015, while she was raising close to €9,000 for the charity AADC Research Trust.
The Trust recently linked Luke with potential life-saving brain surgery in Poland.
Emma says the trialed therapy in Poland is the only thing that could improve Luke’s condition, which is considered incurable.
“The lowest price available is €70,000, and it is basically for the equipment and after-care,” said Emma, who originally grew up in Rathfarnham.
“It could potentially save his life. Four or five different gene therapy results have been incredible. Children have taken their first steps, and others are off some medication.
“There are only 130 people with this in the world – last year 10 passed away.”
The AADC condition is so debilitating, that it is like a form of baby Parkinson’s, according to Emma, “Luke’s condition has deteriorated the older he gets. It is not easy for children and it is not easy for him. At night time he needs heavy sedatives to sleep, which have bad side effects.
“He is 100 per cent dependent on myself and carers – he needs to be hoist-lifted, and his chest is quite vulnerable. A cold could mean a stay in hospital and at times in the ICU (Intensive Care Unit).
“I have a good home-care package, which covers carer times during the day and nurses at night. I wouldn’t be able to stay awake all night.”
Emma has started a JustGiving page in an effort to raise the €70,000 required to travel to Poland for the surgery.
“After the surgery, he will be like a new-born and will need to be taught everything all over again,” she said.
“There will be a lot of work and it will take time, but he will walk, talk and do things other kids can do.”
Emma has appealed for any residents or businesses who wish to donate funds, prizes for raffles, or to organise coffee mornings, to contact her Facebook page.
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