On the face of it, 11-year-old Daragh Cassidy from Armagh is just like any other little boy.
However, the P7 pupil at St Malachy’s Primary School suffers from a condition known as Phenylketonuria, or PKU for short, which he was diagnosed with at birth following a heel prick test.
“Two-days later we got the phone call to say that he had been diagnosed,” Daragh’s dad Chris told Armagh I.
This metabolic condition, which affects on average 1-in-10,000 people in the UK, means that the person lacks the ability to break down the protein in food properly.
If the condition is untreated, or undiagnosed, the person can develop mental issues in the early years of their life. It also has side effects for those who may stop dealing with the condition properly.
Those suffering from the condition have to stick to a low-protein diet. In Daragh’s case, he is limited to 13g of protein a day. The equivalent of three slices of white bread.
At present, PKU is a life-long condition, but limited medical treatments are currently being released to the UK market.
Chris says that the family has to measure out Daragh’s food intake everyday, to ensure that he gets no more than the 13g of protein. They also maintain regular contact with the Royal Victoria Hospital in Belfast.
He explained: “The body can break the protein down but whenever it gets to the amino acid stage, there’s an amino acid called phenylalanine, which the body can’t break down.
“That phenylalanine becomes stuck in the body and can become toxic to the brain and cause severe issues if not diagnosed properly or treated in the long term. There’s a severely big impact, especially in the very early years.”
Chris says that Daragh is required to hold to the low-protein diet, which contains the other amino acids that the body needs in supplement form.
Alongside sticking to Daragh’s diet, the family are hopeful of the rollout of the medication known as ‘Kuvan’ which helps to produce the enzyme to break down phenylalanine.
Chris admits that life can be tough for Daragh at times, with his condition often impacting on his social life.
“Even with a child’s birthday party, you’re entrusting another person to maybe weigh out some food for him and ensure that he eats it and for it to be calculated and counted to see what he has and hasn’t had. So from an early age you have potentially limited invitations to parties because other parents don’t want to engage in that.
“Now in p7 he doesn’t like to bother as much because they’re all going for dinners and having chippies and all he can have is a small amount of food. So he would say ‘why bother’.
Chris added: “Daragh is very stringent. I would call him an advocate. He’s open about his PKU but it does hold him back slightly. He still takes a lunch box to school because it is the easier thing to do. He just tries to simplify his life.
“He’s trying to limit the opportunities for mistake and where it could potentially have a knock-on effect for a few days.
“If, for instance, he did exceed his intake on a number of occasions, that potentially then causes side effects in terms of mood. One minute he could be sitting there, then the next minute he could just break out and cry and he doesn’t know why.”
Daragh’s condition also requires a great deal of planning and preparation for meal times, with Chris admitting that hunger can be a big problem for those suffering from PKU.
“You can’t just go into a restaurant and order something. You physically have to plan your events out. There’s a lot that goes on in the preparation of food.”
In Daragh’s experience, awareness and knowledge of the issues surrounding PKU in Northern Ireland is limited, with restaurants often struggling to understand his requirements.
To this end, Chris wants to make sure that awareness is raised regarding the condition. This led him to push for The National Society for Phenylketonuria (NSPKU), an English charity organisation which raises awareness of PKU, to hold an event in Northern Ireland.
The Society, which is celebrating its 50th anniversary this year and offers support to patients and their families, is now set to hold a one-day conference at the Armagh City Hotel on June 10.
“This year being their 50th, they’re spreading their wings slightly and they’re coming to Northern Ireland,” Chris said.
“It’s just a gathering where people can have a sit down and discuss their situations in life and tell how they cope through their mechanisms of dealing with daily things.
“We’re doing a discussion panel where the panellists will be able to be asked a number of questions. Along with that we’ll have a local man to discuss form filling for DLA and PIP and offer a bit of guidance and support to parents.
“There will also be a dietician, who is part of the NSPKU organisation, who will be there to talk about new products being rolled out and new treatments.”
He added: “The event is for the PKU community to come together and have that bit of reassurance that they’re not the only people going through the same scenario. They’re not the only parents sitting at a table with weighing scales having other people look at them.
“I’ve reached out personally to a number of businesses in the town and they have helped with funding. While the professionals are speaking the kids are going to have a bit of the day to play about. There will be a bouncy castle, face painting and a company from Belfast is bringing in retro arcade machines.”
The businesses that have contributed toward the event include local Armagh businesses; JP’s Chip Shop, Keegan’s Pub and the Toby Jug Pub.
Chris believes that further awareness would help makes the lives of people like Daragh, “that little bit easier,” and help him expand beyond the common staple diet of chips and gravy of those suffering from PKU as currently, many hotels and restaurants simply do not have the information needed to allow Daragh to eat there.
Concluding, to put the condition into perspective, Chris said: “13g of protein is sometimes quite a lot in the community. Some people might be on 4 or 5 grammes. Can you imagine living on two slices of white bread a day? That’s on average about 8g of protein.”
