Siena’s story: Prader-Willi Syndrome
Siena was diagnosed with Prader-Willi Syndrome two days before her first birthday.
Our adorable little 3 year-old, Siena, was diagnosed with Prader-Willi Syndrome (PWS) on March 10, 2011, two days before her first birthday. When we first received this diagnosis, we were of course devastated, and it felt our world had come to a screeching halt. However, over the past two years we have come to realize that this is by no means the end of the road for Siena or any child with Prader-Willi Syndrome. She has started gymnastics and therapeutic horseback riding this year and she LOVES to dance!!!
Everyone who meets our sweet Siena falls in love with her immeditaley. Unfortunately though, because of PWS, Siena has experienced developmental delays, the most severe being her speech.
“I dream of a day that Siena will be able to clearly communicate with us, the day when she and her sisters can tell each other stories.”
Siena suffers from narcolepsy and scoliosis, she is on seizure medication, as well as growth hormone. Siena takes several supplements to help with her speech and daytime sleepiness, such as carnitine, fish oil and B12 injections. Ã¢â‚¬¨Ã¢â‚¬¨
Over the past 6 months we have noticed an increase in her interest in food, and although she is still tiny at only 25 lbs, we monitor what she eats and what food we have around her very closely. A person with Prader-Willi Syndrome lives with a constant feeling of hunger, their brain believes it is starving and their metabolism uses drastically fewer calories than normal (approximately 60% less calories of a typical peer). This can lead to excessive eating, diabetes and life-threatening obesity.
Siena has experienced developmental delays, the most severe being her speech.
In addition, PWS can cause low muscle tone, short stature if not treated with growth hormone, scoliosis, speech apraxia, obsessive-compulsive disorder, difficulty controlling emotions, cognitive delays, skin picking, mental illness and incomplete sexual development.
While there are medications and surgeries to help control many of these symptoms, there is no known cure for the hunger and our children are left feeling as if they are starving, even when their bellies are full.Ã¢â‚¬¨Ã¢â‚¬¨We have become extremely humbled by our fellow PWS Families, amazing doctors who love our kids so much and most definitely by our community of friends and family who have been by our side over the past 2 years.
I can’t say life for Siena will always be easy, but we do know that with all of your support there will always be someone willing to lend a helping hand.
Ã¢â‚¬¨Ã¢â‚¬¨Please help us to continue to spread the word, raising awareness for Prader-Willi Syndrome will help bring understanding and acceptance to the PWS community and could possibly bring us closer to finding a cure!!
Join us at our charity food & wine event, Savor the Sip, on Sunday, July 14, 2013 in Hershey, PA!
You can purchase tickets at www.fpwr.org and if you cannot attend the event but would like to make a donation, please do so on this page.
All proceeds from Savor the Sip and our Virtual Walk will go to fund the Prader-Willi Syndrome Research Plan jointly created by FPWR and PWSAUSA. Learn more about PWS and this event at http://www.fpwr.org/.
We thank you from the bottom of our heart!
The Schoenberger Family