I am the Grandma of a beautiful 7 year old girl who was diagnosed with Prader-Will Syndrome when she was 22 months old. I remember the overwhelming shock when we researched all of the symptoms of Prader-Willi Syndrome. Each described symptom seemed stranger and worse than the last. Then we looked at this child and said, "What can we do to help make her life better?"
I was eager to see the Dr. Phil segment on Prader-Willi. ( Set the recorder and everything.) Of course, I expected the terrible hunger to be the main topic. It is a remarkable symptom! The idea that no matter what or how much my little grand daughter eats, she will always be hungry is so difficult to accept. People with Prader-Willi sometimes describe it as "sharks biting me inside all the time". I know I don't like to be hungry...no one does. How would you like to feel like you were starving no matter how much you ate?
But this is a genetic disorder caused by a deletion or damage to chromosome 15. Neither she nor her parents has any more control over this than they would over the color of her eyes or skin.
I have read some of the messages from well-meaning but misinformed people on this site. If you really want to understand what we know about PWS, just go to www.pwsusa.org . Or just Google Prader-Willi Syndrome.
I was surprised that Dr. Phil and his staff chose a self admitted abusive mother like Nichelle to introduce the topic of Prader-Willi Syndrome on his show. But, I am a faithful viewer and I was grateful for any information about this genetic disorder to reach the public.
As I watched the show, so many emotions rolled over me. I wanted to hug little Savanah. Then I wanted to shake Nichelle until her teeth rattled. Then I remembered her daughter was recently diagnosed and she could be in shock, anger and denial of the whole thing. But, when my daughter found out about her daughter's diagnosis, she was in all these stages too and she only felt love and compassion and a strong desire to help and protect her daughter.
NIchelle needs help with her parenting skills and a LOT of education about Prader-Willi Syndrome. I sincerely hope she takes advantage of any help she is offered for her sake, but mostly for her little girl's sake.
One more thing...so many times only the terrible parts of Prader-Willi Syndrome are talked about. Let me add that PWS kids are very loving and anxious to please. We have filled my grand daughter's life with love and she returns it a thousand times over. I am amazed all the time by her generous spirit, her silly sense of humor, the hugs she gives to all she meets and the eternal innocence of her soul. Prader-Willi Syndrome does not define who she is. She's just a little girl who needs some extra help to get through life and anyone who helps her receives so much in return.
(Original Air Date: 11/03/05) What if you were so obsessed with eating that it almost killed you, or craving food so badly that you yelled, kicked and screamed when you couldn't get enough. Nichelle's 6-year-old daughter has Prader-Willi Syndrome and constantly wants to eat. She once threw a fit so loud, the neighbors called the police. Can Nichelle learn to control her own temper when her daughter has a tantrum? Then, Dr. Phil follows up with Kathy, an anorexic whose condition was so severe, she weighed only 68 pounds. She spent three months in treatment, but her struggle is not over yet. Can her family learn the difference between supporting her and enabling her? Talk about the show here.
