The 2nd Annual Chicken Ride benefits those affected by Prader-Willi
Syndrome (PWS). The funds will be specifically routed to fund the
2nd stage trials on Oxytocin for our dear friends Riley and Jhett
who are affected by PWS. This is a phase 2 trial that will be led by
renowned experts in PWS treatment and research. Studies have
shown that individuals with PWS can have decreased levels of a
hormone called oxytocin, which helps regulate appetite and behavior.
It is thought that, while there is no cure for PWS, that giving this
hormone may help decrease the appetite and improve behaviors in
children with PWS. We hope you choose to join us for our ride and
to help fight Prader-Willi Syndrome.
ABOUT RILEY, jhett AND PWS
Riley and Jhett were diagnosed with PWS (Prader-Willi Syndrome)
before they were 12 months. PWS is the most common known genetic
cause of life-threatening obesity in children. Although the cause is
complex, it results from an abnormality on the 15th chromosome.
It occurs in males and females equally and in all races. Prevalence
estimates have ranged from 1:8,000 to 1:25,000 with the most likely
figure being 1:15,000.
PWS has been historically known as a two stage syndrome, with the
first stage being characterized by hypotonia (low muscle tone) and
poor feeding in infancy, and the second stage exhibiting hyperphagia
(an uncontrollable drive to eat), combined with weight gain on fewer
calories. Current research through an extensive natural history study
has shown that PWS is not just a two stage but a multiphase syndrome.
Riley currently wakes up every morning and says “I’m hungry” before
she says anything else. Since she wakes up early (many times before
the alarm clock) we have learned to give her a few Cheerios to help with the hunger and anxiety so she can go back to sleep. Breakfast then becomes a priority upon the second awakening.
She also struggles with her speech and has been in speech therapy since she was a toddler. Her private speech therapist sees her for 120 minutes each week. She meets with a speech therapist, occupational therapist and physical therapist as part of her IEP (Individualized Education Plan) at school.
Riley is a very sweet and loving child, but at times has behavioral issues. Any change in the schedule causes anxiety and can lead to tears and or a meltdown if not managed properly and in a timely manner. We have a calendar at home that is used to display appointments and other events so she knows what to expect for the month. She is very diligent about the calendar and reminds me of events way in advance.
She has made progress socially and is interacting with the other kids at school. She has experienced frustration when others could not understand her because of her speech issue. She knows what she wants to say but at times has trouble “expressing herself” due to the speech delay and low muscle tone. She does not have the endurance of the peers in her class but tries to keep up with them at recess or in the neighborhood.
While this is challenging for her and for all of us, we have hope that someday there will be a cure or some medication to help with the hunger and other issues we face.
Jhett, is a 2 ½ year old little boy full of spunk and determination. Not words that would be used to describe him at birth. In the early days and months, he was unarousable, he didn't suck to eat, he didn't cry. In fact, he barely moved. In the beginning, many days were filled with fear, tears, adaptation and acceptance. But we quickly learned that he laid his own path and did things in his own way…………his ‘normal’. At his age, he knows no limitations, but as his parents, we know that his future will hold many. We know that from those before us, that we will face an insatiable hunger, food seeking and food anxiety, learning disabilities, physical disabilities and limitations of a ‘typical’ lifestyle. Jhett may not be able to participate in school activities, attend prom, drive, or go to college because of his limitations. The future scares us. So as his parents, we are doing absolutely EVERYTHING to give him the very best chance to reach his full potential………wouldn’t you?
Thank you for your support.
informative links
https://www.fpwr.org
http://www.pwsausa.org
Indiana PWS Chapter: http://www.pwsausa.org/indiana-chapter