One of my gorgeous Granddaughters has PKU (phenylketonuria). A rare genetic metabolic disorder that affects a person’s ability to process an important part of protein phenylalanine. This was diagnosed by new born screening. It is a lifelong condition and there is no cure for it. If left untreated it causes severe brain damage. Treatment is required from birth. This means living on an extremely low protein diet. Bread, pasta biscuits and cereal is all way too high in protein for her. Meat, dairy, fish nuts and seeds are all banned from her diet. She is a happy little trouper, who just gets on with it, uncomplaining. Her food has to be carefully prepared and planned making days out, parties and nursery very difficult. She has to have blood tests every week. The parents of children with this condition face many challenges. When they become adults, they make their own choices but living in a world where food is a big part of daily life with cafes, restaurants, takeaways and advertising it makes sticking to this very restricted diet very hard. It can affect their lives in many different ways particularly with socializing. 1 in 10,000 people are diagnosed with it and so gets little or no funding. I hope to raise awareness to this condition as it isn't visible to others. more research is needed to help improve their lives.

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.