A mother-of-two has praised a Diss business for raising awareness of a rare condition, which affects one in 10,000 people in the UK.
Becca Brunton’s four-year-old son, Zac, has phenylketonuria (PKU), which means his body cannot break down an amino acid called phenylalanine. Without treatment, the acid could build up in his blood and cause irreversible brain damage.
Ms Brunton, of Constable Close, described her delight when she noticed that Diss Funeralcare, in Stanley Road, had put up a window display focusing on the condition as part of PKU National Awareness Month.
“My friend saw it while I was driving and I had to pull over,” said Ms Brunton, who also has a 15-month-old daughter, Bonnie. “When I saw it myself, I just wanted to cry.
“It is not really known about, so to see such a big display in Diss is amazing. It nearly made my heart stop.”
Zac was first diagnosed after having a heel prick test – PKU is one of nine serious conditions that it looks for – at five days old at Norfolk and Norwich University Hospital.
“Being a first-time mum, taking your baby home and then getting a call to say he has this condition that you know nothing about came as a real shock,” said Ms Brunton. “It was so difficult to get my head around at first.
“Now, though, thanks to regular checks with a dietitian at the hospital and an appointment with a consultant in London once a year, it has become the norm.”
To keep Zac’s levels in check, he can have a maximum of six grams of protein a day, which means Ms Brunton has to weigh out certain foods to ensure he does have too much.
“He can’t have meat, fish, cheese or bread – a lot of things that most people would just grab and not think twice about,” she said.
“I also have to check labels and work out how much of things he can have – we even have a set of travel scales for when we go out to eat.”
On top of this, he has to have three supplement drinks a day, which give him the vitamins and nutrients his body needs, as well as having a blood test once a week.
“It is a lot,” said his mum. “But he is so good with it. He never gets upset if he can’t have something and he is so switched on already with what he can and cannot have.
“Things like friend’s birthday parties are hard and I do feel sorry for him because he can’t have the usual party food, but he is so good at asking me what he can eat and recognises most of what he can’t.”
Ms Brunton said she finds it difficult to explain Zac’s condition to people who are unfamiliar with it as there is a lot to take in.
But she hopes that, with the window display and his story, more people will be encouraged to look into it and find out more.
She said: “It’s so important for more people to understand that sometimes dietary requirements exist for a reason, such as an underlying medical condition, and are not simply a life choice.
“It does sometimes make it difficult for us to eat out as most places are aware of better known allergies, but not when it comes to protein.”
After posting a picture of the window display on Facebook, Ms Brunton said she had received a lot of support.
“People have said it is a great thing to do and I have been contacted by so many people, some with children like Zac,” she added.
Gemma Couzens, funeral arranger at Diss (Co-op) Funeralcare, who designed the window said she was thrilled by the positive comments people have made about the display and they they had done their bit to support children with PKU and their families and carers.
“Being active in the community and supporting good causes is something we’re always keen to do – whether it’s a 26-mile fundraising walk, or a window display to raise awareness of a lesser known condition,” she said.
“The idea was inspired by my daughter, who shared that two of her closest friends at school have PKU. Since, I’ve seen first-hand just how misunderstood the condition is and wanted to do my part to grab people’s attention and create a comfortable environment that encourages conversations.”
To learn more about the condition and the support available, go online to nspku.org.
