Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.

Tuesday, November 2, 2010

My Deadly Appetite

Please read my follow up post entitled: My Deadly Appetite: Update on William Weaver... for my interview with William and his family and their continued progress after the show. Hear William and his mother Faith's thoughts about the show.


Tonight, Nov. 3 at 10 pm on the Discovery Channel, a special called. "My Deadly Appetite" will air. This episode is about a young boy named William Weaver, who like my son Nicholas, suffers from Prader Willi Syndrome.

The episode focuses on William and his family's struggle to control his obesity and food seeking behavior. William is admitted to the Children's Institute in Pennsylvania for symptoms related to his condition. The Children's Institute has saved the lives of many children and young adults suffering from PWS. It is like a "PWS boot camp" for families and individuals.

I have not seen this episode, but I am sure it will be very heart wrenching.

I am always apprehensive about watching these types of programs for many reasons.

First, I cry.

I cry uncontrollably, since I obviously have much compassion for, and can relate to, the issues these families face. I cry for my son, Nicholas. He has not started to food seek yet. I say yet, because all individuals diagnosed with PWS will develop this condition. I will say it once again.....ALL individuals diagnosed with PWS will seek food.

I cry for what is to come.

I cry because often these programs are very exploitive. Focusing heavily on the severity of the food and behavioral issues and not on the extensive list of other medical and behavioral issues issues our children face. There is often very little mentioned about treatment and how growth hormone injections have improved the lives of so many sufferers. GH treatment (growth hormone) enables our children to grow more normally, and to burn calories more efficiently so that individuals have an opportunity to remain thin instead of morbidly obese.

I cry because I bury the sadness, the horror and the anger of having to live our lives with this devastating disease.

These shows force me to release all these buried emotions. It is usually a good cry but leaves me tired and numb for many days afterwards.

Please help raise awareness about Prader Willi Syndrome, spread the word about this program and please consider watching.

For more information about PWS visit http://www.pwsausa.org/.
Please read my follow-up post to this story entitled: "A House with No Mirrors"


The Henrys said...

I will watch this! Did I ever tell you that Gracie was tested for PW? We thought she had it for sure, but it was negative. I have a special place in my heart for your son, and others who have PW.

Adelaide Dupont said...


I didn't know that there was only one programme for those with Prader-Willi in the US.

In Great Britain and Northern Ireland, there are several Prader-Willi homes.

Yes, the programmes are one-sided rather than holistic.

In 2002 - when Nicholas was born - I began learning more and more. I read about a young woman named Catherine, and her achievements.

I didn't know very much about growth hormone!

Thank you for your words about My deadly appetite.

Post a Comment