Jades PKU Awareness

Hi, my name is Jade, and I am 5 years old. I have a special tummy, but the grown ups call it Phenylketonuria.  That is a big word for me! So we will just call it PKU! I found out I had PKU when I was a baby, when doctors gave me a heel prick test. Let me tell you more about my special tummy.

What is PKU? 

PKU is an Inherited Metabolic condition, which makes my tummy work differently. I can’t eat the same food as everybody else, because my tummy can’t break down protein.

Protein is made up of wee bits called AMINO ACIDS. One of theses AMINO ACIDS are called PHENYLALANINE. PKU tummies can’t break down PHEYLALANINE.

If I eat too much protein, it builds up in my blood, and makes my PHE levels get too high. If this happens, I will not be able to learn very well at school.

To make up for not eating protein, I follow a special diet, which consists of a lot of fruit and veg! My doctor also writes me a prescription for special pasta, rice, cereal, milk, flour, cake mix, biscuits, etc. All of these items are special, because they are low in protein, that’s why my mummy takes my prescription to the chemist, who orders my special Low Protein food. I also help my mummy make my bread, rolls and cakes, which is good fun!

I help my mummy to weigh out my food and help plan my exchanges. So far, my body lets me have 6 exchanges of protein per day, which my mummy spreads out throughout the day, for example I weigh 45grams of chips which equals 1 exchange, or 25grams of peas which equals 1 exchange, or if I want a packet of quavers this is half an exchange.

I also need to take a protein supplement before each meal, 3 times per day, which doesn’t taste very nice, but it helps fill me up, and is REALLY important that I take it to help me grow up big and strong!

Each week my mummy takes my fingertip test, to find out how much PHEYLALANINE is in my blood, and we send it to the children’s hospital, and then my dietitian tells my mummy my results.

My dietitian helps us learn more about my diet, clinic visits, sends recipe books, and invites my mummy and daddy to cooking workshops, and conferences.

I MUST follow my diet, to help me grow up big, strong, happy and healthy!

MISSION

My mission is to raise more awareness about PKU, as it affects 1 in 10,000 children in the UK, and not many people know about it!

To raise awareness my mummy and big cousin Kirsty, will be training each week, to take part in this years Great Scottish Run (10k)!

All funds kindly donated will go straight towards NSPKU charity, to help support those with PKU and their families.

Thank you for reading my story!

Jade x