This post is dedicated to Momma and Papa Weaver
Many of you may have watched “My Deadly Appetite” on the Discovery Health Channel this month. It is the touching story of William Weaver, a 14-year-old boy diagnosed with Prader Willi Syndrome.
For those of you who have missed the episode it will air again on the Learning Channel (TLC) on December 1 at 8 pm.
William leaves his home and family for the first time in his life and is admitted to the Children’s Institute in Pittsburgh, Pennsylvania for a 3 month stay, where he is treated for his obesity and behavioral challenges, symptoms that accompany PWS.
During the episode, William is successful in learning skills to manage his weight and control his behavioral outbursts. He loses 60 lbs. and returns home as a happier and healthier young man. It is a very touching and beautiful episode.
My post today, is the story of William Weaver’s journey home.
It is the story of one boy’s desire to continue to change his life and the lives of others.
I thank William and his special family for allowing me to share the inspirational story of his return home to his family and friends, his hard work in losing even more weight and his spiritual journey to uncover the true meaning of life.
This is my interview with my dear friend, William Weaver.
“It been hard,” William tells me, and in his voice, a touch of sadness.
“It been aggravating.”
“I was away from my parents and friends, first time away, ever.” William describes his visit to the Children’s Institute and his first time leaving his home. In his voice, sadness and honesty. He remembers the hardships but tries to stay positive by remembering some of his happier moments there.
He quickly recalls his Mom and Dad's first week long visit with him in Pittsburgh. There is a childlike innocence about him as he speaks.
“When my Mom and Dad came to visit me at Pittsburgh for one whole week, I went to get my haircut. Oh my God, I am in the best place in my life. The girls there wash my hair. They condition my hair. Oh my God, I am in love with them. The girl who cut my hair was a Babe! I still have her picture on my wall. She was a fancy, fancy girl!” William giggles.
When asked about his time at the Children's Institute, it is the kind people William recalls most, key individuals who helped him to cope,
“I like Christine, my PT (physical therapist). We start out on wrong foot but then I like her. I make lots of friends. Brittany, my girl friend and Corey, my aide, I love him. I miss him a lot.”
In talking with William, it is clear that the time he spent there was difficult. When asked about his toughest moments, he explains in just three words.
“The quiet room.”
“A rubber room without the rubber,” is how his mother, Faith describes it.
It is clear that William prefers to talk more about coming home, and as he does, he shines,
“Now that I am home,” he says, “Now, I……..FEEL……..GREAT!”
“Lots of people happy for me,” he says. “I am so happy to be home with my family and my dogs, Goliath and Belle.”
His Mom, Faith happily reports that since leaving the Children’s Institute, William continues to lose weight.
“Since May, William has lost a total of 94 lbs!” she explains. “For the first time he can wear store bought jeans.”
William explains with excitement and glee,
“Oh my God, one night my Mom brought me to the mall. I tried on jeans. I looked in the mirror. I have a bunch of happy face. I held my hand to my mouth. I say, Oh my God! Oh my God!”
Faith tells of the tender moment she shared with William in the dressing room.
“When we looked in the mirror, both of us were crying.”
Faith attributes William’s weight loss success to being vigilant about using smaller portions and adhering to his diet. She explains that both the Children’s Institute and the National Organization for PWS encourage the use of the Red, Yellow, Green Diet for losing weight.
Also referred to as the Traffic Light Diet, this program teaches the user which foods should be avoided and which should be consumed in greater portions. Red Light foods are high calorie foods which contain few nutrients and should be avoided. Yellow Light foods are high in calories, but also high in nutrients which make them good to eat in moderate quantities. Green Light foods have lots of nutrients with only a low amount of calories.
“When William came home from Pittsburgh,” Faith explained, “I was scared to death. But we knew we had to stick to the program.......With (PWS) children if there is even a fraction of a chance they can get more food, they will do it.”
Faith explains how she initiated a new meal plan at home for William.
“The Institute provided us with his first few meals for our trip back home, after that we just stuck to the plan.”
Faith explains that the first meal William wanted when he came home from Pittsburgh was hamburgers on the grill.
“I got out the scale out and measured 1 ounce of meat. Do you know how much 1 ounce of meat is? Faith asks, “It isn’t much......But the great thing about the red, yellow, green diet, is all the side dishes he can have.....With the salad and vegetables and sugar free Jello, there really is a lot of food he can eat.”
Faith credits William’s continued weight loss success to the entire family working together.
“As a family, we all got on the same page. No deviation. We do a lot of menu planning as a family. We make our menu up one week ahead of time so everyone has a chance to eat what they want. Then we just stick to it.”
She explains how when William was first born she wasn’t ready to accept his diagnosis.
“I wish we had taken this syndrome more seriously in Will’s first few years of life. At that time, I was in denial, I thought that William would not be affected. Now, I know better. I wish I had started him on a healthier diet right from the beginning, with lots of vegetables and less macaroni and cheese.”
Since coming home, William has increased his level of activity.
“I am a different kid” says William, “My face completely thin. My fingers are longer. I run faster than I used to, but now I feel I run faster and faster.”
“At home, he loves to walk the dogs,” Faith explains, “We also got a new tire for his three-wheeler. He rides it around and around the neighborhood.” Our church also has a gym with lots of exercise equipment and a walking track.”
William has accomplished the 94 lb weight loss and behavior management all without any interventions, no growth hormone injections or new behavioral medications.
“He did this all on his own.” Faith proudly explains.
William participated in a Challenger Baseball League during the fall and joined a Special Youth Outreach Soccer team that played from September to November.
“I play soccer,” William tells me proudly, “I like running and losing weight. My coach say to me, hustle, hustle, hustle and hit the ball, so I really do. I like soccer. I like baseball too. I like hitting the ball. I hit Grand Slam really far over first baseman’s head. I hit it way up in the air. He couldn’t get it and it was a Grand Slam.”