A Clondalkin mother whose son is the only child in Ireland with a rare condition, hopes to raise vital funds for his life saving operation.
Emma Styles’s four-year-old son Luke was diagnosed at five months old with the extremely rare neurological condition AADC (Aromatic Amino Acid Decarboxylase Deficiency.)
AADC affects the body’s ability to produce dopamine, serotonin and neurotransmitters, and there is no cure for the life-threatening condition.
“The easiest way I can explain it to you is it’s like a form of baby Parkinson’s,” Emma tells Dublin Gazette.
“Luke’s body makes uncontrollable movements that can be very painful and because of his low muscle tone, he is susceptible to aspirating, which is like he is drowning in his saliva.
“He is on 21 different medications which have a lot of bad side effects and because of this, he needs strong sedatives to stop his body from moving so he can sleep.”
Luke is non-verbal, unable to walk and requires round the clock 24 hour care.
He is also unable to eat orally and is fed through a peg.
With only around 130 children in the world with AADC, Emma had to go online to connect with other parents going through the same experience as her.
“I’m in a group on Facebook, AADC Research Trust, with other parents of children with AADC and it was through that, I found out about a gene therapy treatment in Poland,” Emma says.
“This treatment, which involves brain surgery, has produced outstanding results on five children so far.
“One of the children who recently underwent the treatment is already showing very positive improvements only five weeks into the treatment.
“He’s already off two of the strong medications and his symptoms have lessened a lot.
“If Luke was to undergo this treatment it could save his life, he’d be able to take his first steps and start communicating.”
The treatment costs €70,000 so Emma has started a JustGiving page to raise the money needed to give her little boy a chance of a much better life.
“We’ve a really, really long way to go and it might take a while, but I want Luke to live a life as close to normal as possible.
“It would be amazing if someday Luke was able to play with his big brother and other children.
“We have reached out to local businesses who may be able to host an event or donate prizes and they’ve all been brilliant.
“There isn’t a timescale on this but the sooner Luke can have the operation the better as his condition deteriorates the older he gets.”
If any readers who like to donate please go to Emma’s JustGiving page https://www.justgiving.com/fundraising/Emma-Styles3