Mum wants Taoiseach to do 'pie challenge' for baby Luke born with a rare brain disorder
A CLONDALKIN family were left reeling when they discovered that their eight-month-old baby became the first person in Ireland to be diagnosed with a rare brain disorder.
Mum Emma Styles (22) and her partner Michael Crossan were devastated to learn that their son has AADC (Aromatic Amino Acid Decarboxylase Deficiency).
AADC is a brain condition that affects the body’s ability to produce dopamine, serotonin and neurotransmitters.
After a series of tests prompted by the concern of Luke’s public health nurse, who felt like he wasn’t meeting his milestones, doctors at Our Lady’s Children’s Hospital discovered that the youngster was likely to be suffering from the disorder.
“The whole journey has been devastating since it started but it was a type of relief to get a diagnosis after months of frustration,” brave mum Emma told the Herald.
“It’s not a guessing game anymore.”
The family have connected with other parents of children around the world who are affected by the disorder through the AADC Research Trust.
“It was a great help to find out that we weren’t the only people going through this,” she explained.
Luke is developing at a slower pace than other children and has some difficulty with his muscle tone, meaning he finds it hard to hold his head up for long.
Emma and Michael, who also have a two-year-old son, MJ, are determined to raise awareness about their son’s condition and hope to raise funds for further research.
“We sat down and tried to come up with something that would appeal to everyone because it is a condition that affects such a small number of people and not
many people are fundraising for it,” the concerned mum explained.
The family have started an online campaign called the Cream Pie Challenge for Luke.
It is as simple as it sounds. People are being asked to spray whipped cream onto a paper plate and ‘pie’ themselves in the face.
Those who take up the
challenge are then asked to donate on the family’s online fundraising page.
Emma and Michael have also thrown down the gauntlet for some very well-known faces to get involved.
“We want to see the Taoiseach Enda Kenny, Joan Burton, Gerry Adams, Mary Lou
McDonald and Michael Martin do the challenge,” Emma revealed.
The politicians are being asked to do the challenge and post a video of their escapades on Luke’s Facebook page.
Baby Luke has been accepted for treatment at Great Ormond Street Hospital in London and the family are awaiting a date.
His brave mum explained that there is no cure for his condition but treatment will help him manage the symptoms as he gets older.
“This research can help find better treatments to allow Luke and other children have the best possible life,” she said.
The family is hoping to raise €6,000 for the AADC Research Trust. Their fundraising page can be found on https://www.justgiving.com/emma-styles1
Luke’s Facebook, where people can upload their videos of the Cream Pie challenge, is Cream Pie for Luke.