As you are probably all now aware we lost my dad Peter Hall a few weeks ago and his funeral will be on Wednesday 11th @ 2pm. The Hurlet and then to Whitecraigs golf club.. Shona was my dad's only grandchild and he adored her. We know it would be his wish to raise money for Our Sho and give the science every chance to provide therapies and hopefully a cure for rett syndrome. Not only to potentially give Shona new opportunities in her life but to help all the children living with this terrible syndrome . Shona was diagnosed at an early age after it became apparent she wasn't meeting milestones. Shona is coming up for 18 on the 4th of October. She has battled with Rett syndrome every day of her life. She has never walked and is in a wheelchair. She has lost the skills to use her hands and do anything to function for herself. So she has 24 hour care from myself. Dad was a huge part of Shona,s life and helped me to get to all of her appointments. So it's just grandma,s job to help now and thank goodness I have her to help me and as a soundboard for all the important decisions we have to make for Shona . Shona has a peg tube and is on a blended diet , she cannot eat and drink for herself. She has had a huge spinal operation and suffers from gastric issues but the most important thing is Shona is bright and happy . She's a fighter and she does not let life get her down. The research is amazing and they believe they may be able to reverse the symptoms of Rett . They are in clinical trials in humans . We have everything crossed that the day will come when we can see those results help make shona,s life easier.

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