Louise's Stafford Half Marathon page

Louise Jones is raising money for NSPKU

Participants: Huw Jones

Donations cannot currently be made to this page

Stafford Half Marathon · 15 March 2020

Exists to help & support people with PKU, their families & carers. It works closely with medical professionals in the UK. It receives no government funding & is dependent on the generosity of its members & the public to fund practical support, raising awareness & research into the condition.

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.

Donation summary

Total
£251.99
+ £56.25 Gift Aid
Online
£251.99
Offline
£0.00

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