Funding life changing research
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In April 2022, Myself and Jaxson’s grandma,Auntie and Godmother will be climbing Snowdon to raise awareness of Prader Willi Syndrome and funds for the charity that is working so hard to find treatments for this life changing condition .
As most of you know my son Jaxson was born with this rare condition, that effects 1 in 15,000 births . It has already effected his life in many ways but I am determined to help in anyway I can to prevent some of the heartbreaking symptoms that his future holds .
One of the most life limiting and debilitating characteristics of PWS is hyperphagia- a constant state of hunger that can not be fulfilled . Patients often call this the “ monster “ and describe it as a constant pain and torment every day of their lives .
Due to the chromosome 15 being effected in patients with PWS , the signal to tell them they are full doesn’t work. People with PWS can not live independently and need 24 hour supervision as the constant need for food means they could eat themselves to death. This puts a huge strain on families and care givers. Food must be locked away & strict diets must be followed .
This is just one aspect of Prader willi syndrome . There is over 40 side effects and each patient suffers differently. It also a spectrum disorder .
My son Jaxson is so full of life and joy that wherever he goes, he makes others smile and laugh . He has the most beautiful personality and the ability to brighten every single day. We feel extremely blessed to have him in our lives . My only wish is that he gets to live his life without constant pain and anxiety .
FWPR;
“We’re not just waiting and hoping for new treatments, and a cure, for Prader-Willi syndrome. We’re aggressively doing something about it. The Foundation for Prader-Willi Research was established with one aim in mind: to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development. “
Clinical drug trials cost around 50 million & that’s why fundraising is so important .
Myself ( Jaxson mum) , Gudrun Allison ( grandma ) Isabelle allison ( auntie ) and Hayley rice ( godmother ) will be climbing snowdon in April 2022. We have never done anything like this before and admittedly none of us are known for our fitness levels but we are going to give it our best go! All four of us have witnessed 1st hand the struggles Jaxson has faced, he is all the motivation we need . Training has commenced and we are all looking forward to this challenge.
Thank you once again for reading and supporting this cause . Our community support is life changing ❤️ X
As most of you know my son Jaxson was born with this rare condition, that effects 1 in 15,000 births . It has already effected his life in many ways but I am determined to help in anyway I can to prevent some of the heartbreaking symptoms that his future holds .
One of the most life limiting and debilitating characteristics of PWS is hyperphagia- a constant state of hunger that can not be fulfilled . Patients often call this the “ monster “ and describe it as a constant pain and torment every day of their lives .
Due to the chromosome 15 being effected in patients with PWS , the signal to tell them they are full doesn’t work. People with PWS can not live independently and need 24 hour supervision as the constant need for food means they could eat themselves to death. This puts a huge strain on families and care givers. Food must be locked away & strict diets must be followed .
This is just one aspect of Prader willi syndrome . There is over 40 side effects and each patient suffers differently. It also a spectrum disorder .
My son Jaxson is so full of life and joy that wherever he goes, he makes others smile and laugh . He has the most beautiful personality and the ability to brighten every single day. We feel extremely blessed to have him in our lives . My only wish is that he gets to live his life without constant pain and anxiety .
FWPR;
“We’re not just waiting and hoping for new treatments, and a cure, for Prader-Willi syndrome. We’re aggressively doing something about it. The Foundation for Prader-Willi Research was established with one aim in mind: to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development. “
Clinical drug trials cost around 50 million & that’s why fundraising is so important .
Myself ( Jaxson mum) , Gudrun Allison ( grandma ) Isabelle allison ( auntie ) and Hayley rice ( godmother ) will be climbing snowdon in April 2022. We have never done anything like this before and admittedly none of us are known for our fitness levels but we are going to give it our best go! All four of us have witnessed 1st hand the struggles Jaxson has faced, he is all the motivation we need . Training has commenced and we are all looking forward to this challenge.
Thank you once again for reading and supporting this cause . Our community support is life changing ❤️ X
Organizer
Jaxson Potts
Organizer
