ORANGE is the color of Prader-Willi Syndrome awareness and the summer sun! Between today and August 28 I'll be raising awareness and some funds for
Prader-Willi Syndrome Association of New England 
and also Latham Centers in Brewster, MA where my sister Stephanie goes to school http://lathamcenterspws.blogspot.com/

 

PWS is caused by the random deletion of chromosome 15 at conception

PWS typically causes:

• Low muscle tone
• Short stature if not treated with growth hormone (Stephanie's taller than me!  because she took HGH shots every day as a kid)
• Incomplete sexual development,
• A chronic feeling of hunger that coupled with a slow metabolism can lead to excessive eating and life-threatening obesity
• The food compulsion can make constant supervision necessary
• Average IQ is circa 70, but even those with normal IQs have cognitive deficits and require special education
• Social and motor deficits also exist
• At birth the infant typically has low birth weight for gestation, hypotonia (weak muscles), and difficulty sucking due to the hypotonia (“failure to thrive”)
• The second stage (“thriving too well”), with onset between the ages of two and five throughout lifetime, usually is characterized by increased appetite, weight control issues, and motor development delays along with often severe behavior problems and medical issues

STEPHANIE, who will turn 19 on August 28, moved to residential school last September after high school and one particularly harrowing summer.

KICKING OFF A BETTER SUMMER FOR 2009, I did a 3-mile walk through Borderland State Park in North Easton, MA on May 30th. Although, PWSA-NE is a support network that covers all of New England, the coming event is one mile from my parents home and where my sisters and I grew up! I just found out Stephanie and her classmates are coming from the Cape to participate!

LATHAM CENTERS is one of the best and well-known programs for PWS and we've found this to be true this past year. My sister is great kid, but the cognitive challenges she faces have made it quite difficult for her to cope with young adulthood and planning for the future. Stephanie can be SO much fun, but there are times she's exhibited such unnerving and frustrating behavior that takes up hours and involves many people to dispel it. Her brain can't process complex situations and she expresses it in the only way she knows how: frustration and perseveration (inability to let go). It took it's toll on our family, including Stephanie, over the last few years. But It's become easier, with Latham Centers' help to understand it's the PWS and it doesn't define her. We only want what's best for her, even if we have to tear our hair out to figure out what that even is!  

I've decided to give it my best effort to raise some awareness in honor of my sister and our family, other PWS families, and in appreciation of supportive professionals that can help. Thank you for any support you may decide to give. 

Sincerely, 

Amy Dowling