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Walking for Siena: One Small Step for Prader-Willi Syndrome

September 12, 2015

This is Siena. She is the happiest and sweetest two 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 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! She recently started walking independently, which has been a huge accomplishment!! 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.

We need your help!! Please consider making a donation to the Foundation for Prader-Willi Research (FPWR) to help eliminate the challenges of Prader-Willi Syndrome and help Siena live a FULL and independent life! 100% of all donations will go to FPWR and help fund PWS research!

Details

Date:
September 12, 2015
Event Tags:
Website:
http://curesiena.com

Organizer

Felicia Dimuccio
Website:
http://CureSiena.com

Venue

Johnston Memorial Park
Johnston, RI + Google Map
Website:
CureSiena.com