Paxton's PWS Oxytocin phase 2 trial
Donation protected
ALL PROCEEDS GO TO THE OXYTOCIN TRIAL :)
My son Paxton was born October 21st, 2013. What had been a normal pregnancy was turned upside down when he was born "floppy," having EXTREMELY low muscle tone (he couldn't even cry or barely move). He could not suck from a bottle and had to have an ng tube for feedings for 5 weeks and placed on oxygen at night for sleep apnea for the first year of his life. The doctor's were dumbfounded. Assuming the cause of these symptoms could be Muscular Dystrophy. It was a mystery until day 9 when genetic testing revealed he had a rare genetic disorder called Prader-Willi Syndrome. We had never heard of this disorder before and after reading information online, we were scared shitless.
Paxton began a growth hormone injection regement nightly (one of the few treatments to help those with PWS) at 3 months of age.This improving muscle mass and allowing him to reach milestones (both physically and cognitively) much quicker then others who do not receive GH.
There is no cure and no treatment for what is to come in the future, hyperphagia (insatiable hunger). He will never feel full no matter how much he eats and his metabolism does not burn fat as fast as a "normal" person so if the hyperphagia wasn't enough, he is only allowed 1/2 the amount of calories as a "normal" person.
The best we can hope for is a drug that can allievate these symptoms. Oxytocin is the only drug thus far with great success in treating the symptoms of hunger and behavioral issues that manifest due to the disorder itself. The Oxytocin trial during Phase 1 showed extremely promising results in improving the lives of those affected by PWS by relieving these issues.
Please help not only Paxton but the PWS community raise money for Phase 2 so this exciting avenue of research can continue.
My son Paxton was born October 21st, 2013. What had been a normal pregnancy was turned upside down when he was born "floppy," having EXTREMELY low muscle tone (he couldn't even cry or barely move). He could not suck from a bottle and had to have an ng tube for feedings for 5 weeks and placed on oxygen at night for sleep apnea for the first year of his life. The doctor's were dumbfounded. Assuming the cause of these symptoms could be Muscular Dystrophy. It was a mystery until day 9 when genetic testing revealed he had a rare genetic disorder called Prader-Willi Syndrome. We had never heard of this disorder before and after reading information online, we were scared shitless.
Paxton began a growth hormone injection regement nightly (one of the few treatments to help those with PWS) at 3 months of age.This improving muscle mass and allowing him to reach milestones (both physically and cognitively) much quicker then others who do not receive GH.
There is no cure and no treatment for what is to come in the future, hyperphagia (insatiable hunger). He will never feel full no matter how much he eats and his metabolism does not burn fat as fast as a "normal" person so if the hyperphagia wasn't enough, he is only allowed 1/2 the amount of calories as a "normal" person.
The best we can hope for is a drug that can allievate these symptoms. Oxytocin is the only drug thus far with great success in treating the symptoms of hunger and behavioral issues that manifest due to the disorder itself. The Oxytocin trial during Phase 1 showed extremely promising results in improving the lives of those affected by PWS by relieving these issues.
Please help not only Paxton but the PWS community raise money for Phase 2 so this exciting avenue of research can continue.
Organizer
Sean Pudney
Organizer
Winter Garden, FL