Wednesday

Prader-Willi Syndrome

Alright, I'm back into my research mode and thought it might be educational for my readers to learn about a syndrome I have had experience working with...

When I was a teenager I operated a dance school which focused on Tap & Jazz dancing. I wanted to share something I loved with kids who otherwise wouldn't have access to lessons. The nearest city with a dance school was 50 miles away, and the classes were extremely overpriced. My studio was based in a small shopping center with a grocery store, liquor store, and gas station... and classes were $15 a month for a two-hour class every weekend.

About 2 weeks after putting up my first flyer I received a call from a woman who wanted to sign her daughter up for classes, but wondered if I was willing to have a "special needs" child in my classes. The woman explained her daughter had balance problems and her hope was that dancing would give her better coordination. I was happy to have another interested parent, and the little girl began classes the following week. She was 8 years old, and her name was Megan - - the sweetest little girl who was always so excited and eager to learn.

As time passed, I became more familiar with all of the parents, and learned that Megan had Prader-Willi Syndrome (click to learn the basics). The following summers, Megan's mother invited me to a Prader-Willi convention to meet more families living with the syndrome. The event was amazing, with so many families sharing so much love for everyone. There were games and events for the children, and seminars for their parents.

At the end of the week, Megan's mother had a different look in her eyes... one of hope for everything that could be. She had learned about a new treatment many of the children were receiving that stimulated growth and physical development (most children grow into adulthood with limited muscular definition and are typically petite). Incredibly, Megan began to show physical changes within a few months of beginning her treatment. The following years she grew with her classmates, and graduated from high school last year at a respectable height 5'10". Her pictures now show a special woman who stands just taller than her mother, and just shorter than her father.

To learn more about the Prader-Willi Syndrome, treatments, and support organizations - follow the links below!
Q & A
History of PWS
Genetics of PWS
Food Pyramid & Diet
Behaviors & Management
Mayo Clinic Information

1 Comments:

Anonymous rosie said...

I watched a show on that on Discovery. It followed the lives of three with it. It was so sad. I'm glad she got treatment that worked for her, the people on the show didn't have anything that worked for them, one was destined to be in a facility for the rest of her whole life because she was extremely hard to control. I have never known somone with it, it's nice to know that she is doing well.

1:39 PM  

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