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Louise Jones avatar
Louise Jones

Louise's Stafford Half Marathon page

I am running the Half Marathon in Stafford, for N.S.P.K.U. because I want to raise awareness about the condition.

32 %
£80.00
raised of £250 target
by 4 supporters
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  • Team members: Huw Jones
  • Event: Stafford Half Marathon, 15 Mar 2020

N.S.P.K.U.

We exist to help & support people with PKU. to promote the care & treatment of PKU's.

Charity Registration No. 273670

Story

Thanks for taking the time to visit my JustGiving page.

Both my sister and I were diagnosed, at birth, with PKU - luckily for us. If the heel prick test that all babies now have didn't exist, we wouldn't both be fit and healthy like we are today. We could have been mentally and/or physically handicapped. 

Thanks to that heel prick test we are well, however we do have to follow an extremely restricted diet - no meat, dairy or fish for us. We have to take supplements several times a day to keep us healthy, to give us the goodness we are missing out on in all those food groups we can't eat.

There are other treatments which could allow us to eat a normal diet, possibly with no restrictions whatsoever, however they aren't available in the UK. It's available in several other countries, but not here in the UK ☹

We want to raise awareness of both the condition and the lack of treatment in the UK as it would be life changing for us and lots of others - Including children who won't understand why they can't eat the same school dinners as their school mates or even the same dinners as their siblings.

Visit http://www.nspku.org for more information.

Thank you.

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