PKU/Metabolic Fund 333-050

Thank you so much for considering our charity as the recipient of your fund raising event and for your very kind donation. At Birmingham Children’s Hospital, we care for at least 1000 very special children with PHENYLKETONURIA (PKU) and other INHERITED METABOLIC DISORDERS (IMD). These children come to us from over a large area including Herefordshire, Shropshire, Staffordshire, Warwickshire, West Midlands and Worcestershire.  

 

All of these conditions are very rare and serious, and many will cause brain damage and other devastating consequences if undiagnosed and untreated. Our aim is to diagnose these conditions as early as possible so we can start immediate treatment.

 

PKU is our most common condition. It affects 1 in 10,000 children. In the UK, every baby is screened for PKU when they are about 5 days old.  We are also test for some other conditions (e.g. MCADD) at the same time. In the UK, children with PKU are treated by a low phenylalanine diet only.  The dietary treatment is particularly difficult but the consequences of not treating PKU are so severe that we no option.  Children cannot eat meat, fish, eggs, cheese or milk.  They also cannot eat ordinary bread, biscuits, cakes, chocolate or pasta.  Their diet is made up of special low protein flours and breads.  As you can imagine, there are few normal foods that children can eat and we are constantly trying to make the diet better and easier. With optimal treatment, children with PKU should grow to reach their full potential, but their treatment is very challenging along the way.

 

Many of our other children are also treated with special diets (e.g. MAPLE SYRUP URINE DISEASE, LCHADD) or diet and drugs (e.g. GLUTARIC ACIDURIA TYPE 1).

 

We undertake a number of innovative research projects to try and help all our children. We also try to do many other things to support our families.  We produce dietary information; undertake innovative research programmes; run family conferences and fun days; organise schools for children with PKU; our children attend adventure holidays to help them become more independent; we produce regular updates for families; and we have a part time peer support worker who works with children and new families. We try and continually improve our service but we are very dependent on charity donations to help us to deliver the best care we can for our patients.

 

Anything you can do to support our charity will be much appreciated. We value all the help we receive. We are very grateful to you for all your time and dedication in raising the funds to help our very special young patients.

 

With best wishes

 

Anita MacDonald

Consultant Dietitian in PKU

 

 

 

Fund number: BCH charities PKU/IMD Fund: 333-050

 

BCH Charities: Registered charity number 1074850

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