Welcome to our JustGiving page. My son, Max (pictured), was diagnosed with Phenyketonuria (PKU) through the heel prick test that is done at the birth of every child in the UK. The disease affects 1 in 10000 and affects the bodies ability to break down Phenylalanine, a building block of protein. Left untreated, this build up of phenylalanine causes significant and permanent brain damage. The condition can be treated by means of a strict diet that has no Dairy, Meat, Fish, Poultry, Bread, Pasta and restricted amounts of Fruit and Vegetables. This highly synthetic diet is then supplemented by various medications. The diet should be followed for the sufferers entire life.  There is NO CURE for this condition which affects an individual during every meal, every snack, every drink, every second of every day for their entire life.

Max looks like any regular 4 year old little boy. He is funny, loves outdoor activities, is a great sibling to his older brother and baby sister and is extremely cheeky. Although he is doing well, we wait for each milestone with extra anticipation and a lot of hard work goes into making sure he stays on track. Keeping on track requires taking 4 supplements everyday. When things are going well these may take 10-15 minutes each, on rough days they can take 1 hour plus. We take blood samples every Saturday morning and send via post to be checked, hoping the result comes back telling us that he is within the right limits. When they do were all happy and we carry on, but when they don't we adjust his diet to reduce his protein intake even further. On a regular day he is allowed 6g of protein, approximately 3 slices of regular white bread. On bad days we take that down accordingly, or have to remove it entirely. Every party or gathering, Max is the kid who eats his own food and has to be watched to make sure he doesn't eat something he shouldn't, and to make sure a kind and attentive parent doesn't top him up. We are the parents who check every pack, every drink, and are scared when we see loose food because we can't calculate the protein content without the packaging. Meal times can be stressful, keeping an eye on how much he eats or leaves. We take every meal, every supplement and every blood reading as it comes and we are loving our family life.

The NSPKU offer support to the individuals and families who struggle day to day with this condition. They are managed by a team who all have PKU in their families and use their experiences and knowledge to promote the care and treatment of PKU. Formed in 1973, they help fund study days, research and support groups, whilst publishing articles and support material such as food lists for families with PKU. 

By supporting the NSPKU we hope to help this great organisation continue its fantastic work of supporting families with PKU, and also provide vital funding towards research into new treatments, and hopefully one day a cure, for the disease. By  scaling Ben Nevis, myself and my friends hope we can also help the charity scale new heights in the amazing support it offers.

Thank you for taking the time to read through the page, we all hope you have been inspired to donate and help this great cause. Below are some links for more information.

Andrew Tasker (Max's Dad)

This short video shows what can happen if PKU is not diagnosed or treated, simply copy and paste it into your search engine: 

http://PKUlife.TV/2014/04/25/forkaty 

Below is also a link to the NSPKU website which contains further information, simply copy and paste it into your search engine: 

Http://www.NSPKU.org/information/whatispku 

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.