WATCH: Dublin mother launches 'cream pie challenge' for brave baby diagnosed with rare disorder
Emma Styles (22) kicked off the Cream Pie challenge to raise awareness for AADC
Published 15/07/2015 | 13:43
A young Dublin mother is trying to start a new online campaign to raise awareness for her baby son's debilitating and incurable disorder.
Nine-month-old Luke Cross is the only person in Ireland with AADC, which affects the brain's ability to produce dopamine and serotonin, which are needed to maintain a regular standard of living.
His parents knew from a young age that there was something wrong according to Luke's mother Emma Styles.
"He was asleep a lot. After a while, there were days you’d change him three or four times in a row. He had really bad reflux. He thought he might be getting sick because of allergy to milk protein," she said.
"Doctors started doing random tests, but they had to narrow it down. We were really lucky that the doctors tested for it, because it’s so rare.
"Some children who have AADC can't walk, while others can't talk, others can't eat or drink by themselves. Some children respond brilliantly to treatment and can do everything but still have issues with other things. It all depends on how well they respond to treatment."
Since discovering that baby Luke has AADC, which stands for Aromatic Amino Acid Decarboxylase, Ms Styles (22) and her partner Michael have brought him for treatment in London's Great Ormond Street Hospital.
"We got to meet the doctor who’s running the show. She the expert on AADC. We feel a lot more confident after meeting her. It really put our minds at ease," she said.
Since the meeting, Luke is on new medication which has already reaped positive results. Previously, Luke had an oculogyric crisis every 72 hours, which could involve the baby experiencing tightening muscles, headaches, eye pain and intensely painful jaw spasms. Since moving onto the new treatment, they are becoming less frequent.
"I have a really good feeling, because of his response so far. There have been a few setbacks, but we’re still rolling forward," she said.
Emma is now looking for people eager to help her baby son to take part in a new online challenge. The 'Cream Pie Challenge for Luke' campaign asks people to fill a paper plate with whipped cream and squash it on their face or on a friend's face. Much like the ice bucket challenge, people are then asked to nominate five friends and make a donation to the AADC Research Trust.