Meet Declynn and Hear Her Story About Prader-Willi Syndrome
Our Casual Fridays for the month of January benefited the Prader-Willi Foundation. On Fridays throughout the month of January we were permitted to dress down with a donation to this wonderful cause. We raised $200, which the agency matched for a donation of $400 to the Prader-WIlli Foundation. This Foundation supports individuals and families diagnosed with PWS.
What is Prader-Willi Syndrome (PWS)?
PWS is a complex genetic disorder affecting many different parts of the body including appetite, growth, metabolism, cognitive function and behavior. It is caused by a deletion of part of a chromosome. It is typically characterized by low muscle tone, short stature (when not treated with growth hormone), incomplete sexual development, cognitive disabilities, behavioral problems, and the most well known characteristic: chronic feelings of insatiable hunger combined with a slowed metabolism that can lead to excessive eating and life-threatening obesity.
Who has Prader-Willi Syndrome?
Anyone can be born with Prader-Willi syndrome, male or female. It can also be brought on later in life as the result of a brain injury. It is actually estimated that 1 in 12,000 to 15,000 people has PWS.
Why the Prader-Willi Foundation?
We chose the Prader-Willi Foundation as our Casual Friday charity because one of our beloved clients has a child who was born with PWS.
Read below as Jaelle explains in her own words what it was like to have a child born with this disorder.
Michael and I were elated to be expecting our first child in March of 2015. I had a healthy pregnancy despite morning sickness that lingered throughout the pregnancy. According to our medical team, the baby was growing and all of our prenatal testing came back ‘normal’.
On March 26, 2015 at 11:47 a.m. Declynn made her arrival weighing 5lbs 15oz. The nurse explained that Declynn was not holding her temperature well and that she would need to spend some time in the incubator. The nurse assured us that this was common and that she would be returning to the room shortly. After some time in the incubator her temperature was better and she returned to us. During our four day hospital stay we observed that Declynn was not active or crying, but again we were assured by doctors and nurses that some kids “wake up” after a few days and to enjoy it while it lasted. She was released from the hospital 5 ounces lighter than her birth weight
Early Warning Signs:
Looking back there were so many red flags that something more was going on. Declynn did not demonstrate any hunger cues and did not root or cry. She was unable to nurse because she lacked the muscle strength to do so. She had difficulty regulating her temperature and difficulty regulating her blood sugar.
At our 2 week follow up with the pediatrician, Declynn had not returned to her birth weight and the pediatrician was concerned about her low muscle tone, poor weight gain, lack of hunger cues, etc. We were advised to make appointments with specialists. Each specialist did their tests and noted that they did not know what the cause was.
By the end of week three, Declynn had still not returned to her birth weight and she was admitted to Hasbro Children’s Hospital for further evaluation. While at Hasbro a feeding tube was used to ensure that she was getting the nutrition she needed. We spent 4 days at the hospital and saw every specialist you can imagine; still no answers. We were discharged from the hospital with some genetic and metabolic lab work pending and new equipment being delivered to our home for use with her feeding tube.
Finally Getting Some Answers:
Two weeks after we left Hasbro, we got a call from the geneticist saying that they had found something on the lab work. We went in the following day and they told us that Declynn was missing genetic material on her 15th chromosome. This information coupled with her symptoms allowed them to diagnose her with Prader-Willi syndrome (PWS). They proceeded to tell us more about PWS, setting us up with an Early Intervention team.
We left that appointment feeling a million emotions and having an equal amount of questions. We ignored their advice and did google; we were met with a gloom and doom picture of what Declynn’s future would be like.
Hope & The Prader-Willi Foundation:
In our google search we found the Prader-Willi Syndrome Association USA (PWSAUSA) and Foundation for Prader-Willi Research: their messages were clear, there is hope…hope for a treatment for many of the symptoms that come with PWS, especially the hunger. Through these organizations we found a community of families who also had loved ones with PWS, including 4 families who live just minutes from us who also have little girls with PWS. Since Declynn’s diagnosis we have taken part in raising funds for both PWSAUSA and FPWR for this crucial research.
Today, Declynn is 10 months old and is one of the happiest kids you will ever meet. She continues to exceed our every expectation and proving that PWS is something she has, not who she is.
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