When Caoimhe was just a week old we received a phone call from the hospital to say she had a rare metabolic disorder called PKU.

It meant she had a restricted diet & she couldn’t eat the majority of foods we all took for granted such as meat, fish, cheese, bread, chocolate. A lot of her foods were prescribed from the chemist & the rest were weighed out on scales. Too much protein would have lead to severe brain damage.

In the past year Caoimhe has been given access to a life changing drug which has made things slightly easier such as meeting up with friends or having school dinners.

But there are those for whom this treatment is not suitable so we need this fundraiser to help raise vital money for research into new treatments.

On Sunday the 15th September 2024 the PKU community will come together to take part in races around the UK to fundraise £10,000 for the NSPKU.

The NSPKU use donations to support those living with PKU and their families through: education and research, support, community, advocacy and campaigning.

Please donate to enable the NSPKU to continue their work in supporting the PKU community!