This is Siena. She is the happiest and sweetest seven year old you will ever meet. She is full of so much life and love and is an inspiration to everyone who meets her! Siena has something called Prader-Willi Syndrome (PWS), and has already faced many challenges in her life. PWS is a rare and complex genetic disorder that occurs sporadically in 1 in 15,000 births. PWS causes many complications, which include low muscle tone, developmental delays, and a chronic feeling of hunger. There is no cure for Prader-Willi Syndrome.
At birth, Siena was very weak and lifeless, not able to move, cry, or even eat on her own. Along with weekly physical, occupational and speech therapies, Siena began growth hormone (GH) therapy as an infant. People with PWS are often prescribed GH injections to help increase muscle tone and improve body composition. Today Siena is so much stronger! Though milestones for Siena have been delayed, she has reached them, and she makes us so proud every day!!
Although Siena has overcome some of the challenges of PWS, without a cure there will be many more that she will face for the rest of her life. People with PWS never feel full, and with a slower metabolism than most, they need about half as many calories. The feeling of hunger can lead to overeating, obesity, and sometimes even death. For this reason, many individuals with PWS do not live independent lives.
Over the last few years, we've raised so much, including our first year where our One Small Step fundraiser raised just over $139,000 and helped fund crutial research for PWS-- Thank you for your support! With your help, we are changing Siena's future! Please consider supporting our fundraiser this year by making a donation- any amount will help, and no donation is too small!! 100% of all donations will go to FPWR and help fund PWS research! THANK YOU!!