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Rebecca Neish

Oliver's page

Fundraising for Foundation for Prader-Willi Research UK

170 %
£170.00
raised of £100 target
by 18 supporters
Donate
  • Event: One Small Step Pub Walk, 22 Jul 2017

Foundation for Prader-Willi Research UK

We fund research in Prader-Willi Syndrome to give hope for a brighter future

Charity Registration No. 1141923

Story

Many of you will already be aware of our story so far if you aren't please have a look at our blog ojspws.com

To cut a long story short our little man has prader willi syndrome. This was a complete shock when he was born and after four weeks of being in a neonatal unit we were finally allowed home.

Prader willi syndrome is rare genetic condition. It could happen to any pregnancy and just so happened to happen to us, the chance of it happening is 1 in 15-20 thousand. So aren't we the lucky ones?! If you haven't managed to meet Oliver yet you're missing out. He's the cutest little munchkin ever and surprises us daily. He's already achieving milestones that we thought would be a little way off.

The foundation for prader willi research is constantly looking into new treatments and therapies for those with pws as well as looking for ways to improve their health and well being.

FPWR look into treatments that will help some of the many different symptoms that come with this rare genetic disorder. The variety of symptoms is vast but the more challenging symptoms of behavioural issues and hypotonia is being researched into to try and help families and those affected by the condition

Without the funding we won't be able to even have hope that medical advances will be able to lessen symptoms never mind help control them

Without the research we would never have known half of the things we know about pws, which has already given Oliver a head start, all money that you donate will help Oliver, as research is the only way we're ever going to get any help with his condition

To raise money we're walking 12.5 miles on a scenic walk from one pub to another (there are a few stop offs) sounds like fun hey?! Want to join us?!

http://www.almond-pubs.co.uk/one-small-step-pub-walk-2017/

Any amount of sponsorship we're grateful for but if you're interested in raising money too join up and come and walk with us and the other families from around this area in England!



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