Thursday 21 November 2019

'Revolutionary gene therapy is my boy's only hope' - mum

Emma Styles’s son Luke (4) has a rare neurological condition
Emma Styles’s son Luke (4) has a rare neurological condition

A Dublin mum believes a revolutionary gene therapy available in Poland could prove life-changing for her son.

Emma Styles's son Luke Cross (4) is the only child in Ireland who has been diagnosed with an extremely rare neurological condition called aromatic amino acid decarboxylase deficiency (AADC).

The devoted mum said the easiest way to explain it "is like a form of baby Parkinson's" but it comes with many other issues.

"Luke requires 24-hour care," Ms Styles (27), who is also mum to six-year-old MJ, said.


"He is completely dependent on everybody else around him. He can't walk or talk. He can't eat anything orally so he needs quite a lot of help."

Ms Styles, who lives in Clondalkin but is originally from Rathfarnham, said the gene therapy replacement treatment in Poland is a new medical breakthrough.

It involves brain surgery, and the surgery has been performed on around five children to date, with positive results.

She said Luke, who is a patient at Our Lady's Children's Hospital in Crumlin, is currently on 21 different doses of medication a day.

For the youngster, the potential benefits of the new gene-therapy surgery would be reduced medication and improved muscle tone.

If successful, Luke "would be able to take his first steps. He would be able to start communicating and hopefully, start eating orally".

"It would make a massive difference. It would change his life completely," his mum said. "It's the only hope that Luke has."

It is extremely rare to be diagnosed with AADC.

At the moment, there are around 130 people worldwide who are diagnosed with the condition, according to Ms Styles.

It has a diagnosis rate of just one in every 55 million people.

She said that Luke "has the cutest little laugh, it's quite infectious and he has the biggest little smile".


"He doesn't have it easy. It is quite hard on him, but he is very brave after everything he has gone through. Every day he smiles," she said.

Ms Styles will be travelling to Great Ormond Street Hospital in London for a medical appointment for Luke.

She has also been in touch with the neurologist in Poland who will perform the surgery.

She has started a JustGiving page in an effort to raise the €70,000 required to travel to Poland for the surgery.

To donate see: justgiving.com/ fundraising/emma-styles3

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