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Andrew Gray avatar
Andrew Gray

Ruby & Holly's 1/2 marathon challenge

We are hungry for a cure for Prader Willi Syndrome for Foundation for Prader-Willi Research UK because beautiful Rosie deserves the best in life xxx

485 %
£485.00
raised of £100 target
by 46 supporters
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  • Team members: Ruby Judson & Holly Gray
  • Event: Plymouth Halth Marathon, 23 Apr 2017

Foundation for Prader-Willi Research UK

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

Story

So the fabulous Ruby & Holly are running the schools half marathon and have really kindly asked if they could help with the fundraising for Rosie. Our family & friends will be familiar with Rosie's story but Ruby's won't, so here it is....  We are 2 years into our Prader - Willi Syndrome Journey with Rosie. If I'm honest it's still so very raw, still so hard to accept, IT ALWAYS WILL BE, still hurts so much, and I still walk around in a blur sometimes, in disbelief but guess what, we've got through 2 years!
Rosie turned 2 on 21st Dec 16 and she is a happy content little girl, who loves to be played with & engaged with. She steals your heart when you meet her, and lights up the room with her lovely little smile. She is adored by us, her 3 sisters and indeed everyone who meets her. As Rosie gets older, we are still learning more about the syndrome, it keeps on getting scarier! and what the future holds for Rosie, we believe so much that RESEARCH is so very vital in helping Rosie have a more comfortable future, which is why we are asking for you to help in anyway you can. Please donate what you can :) We ask that you donate what you can. If we all do a little we can achieve a lot. Rosie needs your help. Let’s make it happen. 
Rosie was diagnosed with Prader Willi Syndrome shortly after her birth. The day our world changed completely. Part of Chromosome 15 is missing, and the result of this is Prader Willi Syndrome (PWS). I won't go into the history too much of how Rosie was as a baby as it is very upsetting. Rosie will be forever hungry, she will never feel full up!!! Heartbreaking beyond belief, it hasn't happened yet but I dread the day it does. Rosie is 2 but is only just learning to stand for a few seconds, and can't walk yet. She is delayed in meeting her milestones and is non verbal. She has slow metabolism, and will have to be on a strict diet of only 1000 calories, hard enough for a non PWS person, let alone someone with an constant aggressive hunger. Cupboards, freezers, the kitchen will have to be locked and Rosie won't be able to be left unattended. She has slow muscle tone, and is on a daily injection to help with this. The list of difficulties are endless and beyond heartbreaking. We support the FPWR as it funds research into PWS, and research is our hope for a better future for Rosie.

This justgiving page will be used all year, for anyone who wishes to help us with Fundraising, races, mufti days, cake sales, beard shaves ANYTHING you might be able to do to help us :) 

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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.

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