NEW ORLEANS -- A special group of families is making Washington D.C. aware of a genetic condition that causes non-stop hunger.
Wednesday, as they told lawmakers on Capitol Hill how they can help in the fight against childhood obesity, First Lady Michelle Obama also included them in her "Let's Move" event at the White House.
Back here at home, local families are supporting them because they understand the emotional journey ahead first hand.
Seven months ago Kelly Theriot welcomed her first child Kylar. But something was wrong. There were breathing problems, sleep apnea, she didn't feed well or cry and was floppy with low muscle tone. At one month old, a blood test confirmed Prader-Willi syndrome.
"I could take the mental setbacks. I could take the physical setback, but what scared me the most is, I don't want my child to be feeling pain all the time, constantly feeling like their hungry," Kelly Theriot said through tears.
Prader-Willi is a rare genetic defect. Along with learning and developmental disabilities, children, at first, don't eat enough, then want food non-stop. They can becoming agitated without it.
Kelly and her mother Ann Robbins of Luling searched for others in the area. They found Maegan Richard in Houma.
"He's in speech, occupational therapy, physical therapy, special instruction, aquatic, horse therapy, like he's a therapy kid," said Maegan Richard of her son.
Cade will be three in May. He is just beginning the phase of never-ending hunger. She said the heart of her home is the kitchen; for Cade it's a loaded gun.
It was a little past lunch time and Cade was telling his mother over and over that he was hungry.
Maegan has an older healthy son and is expecting a daughter. She reaches U.S. families online. She organizes the local arm of the global fundraising walk for research in May. The family travels to Florida twice a year for treatment from a Prader-Willi specialist.
Kelly also found comfort in meeting another parent in Houston.
"Her daughter is just starting to say, 'My stomach hurts a lot,'" remembers Kelly.
There is some medical help. Regular injections of human growth hormone, or HGH, from infancy through teen years help develop muscle strength, lower the risk of obesity and may help cognitive function.
"Now that growth hormone seems to be doing so well the question is do adults need it adults with Prader-Willi need it and there's some fascinating research suggesting that maybe it will even benefit these kids once they stop growing," said Dr. Stuart Chalew of LSU Health Sciences Center and head of Pediatric Endocrinology at Children's Hospital.
"You look at the pictures of a child who may be three or five and they're obese, and they put them on the growth hormone, they look like a typical child, just, you know, normal weight. It's amazing. It's just absolutely amazing," said Ann Robbins, Kylar's grandmother.
But Dr. Chalew says HGH is not a cure. The children need nutrition and behavior therapy, medications for attention span and special nurturing in school. She wants her granddaughter to have hope and a normal life and not be judged by others.
"The support group is going to be the most important thing, because these are people who are dealing with it every single day," Ann said about the parents.
The fundraising walks around the world in May are for research. The local walk:
Saturday, May 18, 2013
Mulberry Park in Houma
Registration: begins at 4:30PM
Kids ½ Mile Run/Walk: begins at 5:30PM
(12 and under)
No Registration fee for ½ mile!
5K-begins at 6:00PM
$25 Registration Fee or Fundraise a minimum of $40
Letter from Mrs. Richard:
My name is Maegan, I live in Houma, and my son has Prader-Willi Syndrome. A complex genetic disorder which causes a never-ending feeling of hunger. It doesn’t matter how much they eat, the hunger pains never leave. Ever.
The heart of our home, the kitchen, is like a loaded gun for our child.
Although one in 12,000 babies are born with this diagnosis, it is very under-researched.
Together with other families who are living with this issue, we have raised $3,000,000 since 2005. It started as one fundraising walk and has grown to 65 walks globally in 2012. Our goal for 2013 is 100 One SMALL Step walks worldwide.
Even the White House has taken notice. Michelle Obama has invited the Foundation for Prader-Willi Research to be part of her Let’s Move event at the White House on March 6th.
Our group will have the opportunity to meet with government officials to discuss the specific role we can play in the fight against obesity in general, healthy schools and the importance of exercise for children. The premise is that the Prader-Willi community already has an answer to obesity as our children are genetically set to become obese. The only thing stopping the obesity is the management of our families and we would love to share what we have learned (as the money raised is being used to fund a research plan created by 65 world-renowned researchers).
More than 50 Prader-Willi families from the Washington area will join together on Capitol Hill for a photo opportunity and mini-rally on March 6th. We would love if you would consider covering this story. I think your readers might find it an inspiring example of taking one small step at a time to make a true difference.
For more information visit www.fpwr.ca (Canada) or www.fpwr.org (USA), contact:
Here is the video that got Michelle Obama’s attention on You Tube.
Louisiana Mother: Patsy
Louisiana Grandmother: Ann