Saturday, September 26 fundraiser honors local girl, reflects on the life of another
Bottle up her giggles and you have the perfect natural remedy prescription to be opened and “absorbed” p.r.n. (when necessary) for a day brightener.
That precious, inspiring laughter belongs to Kendall Marcy – the newest addition to the Clint and JennaLee Marcy family – born on February 16, 2015. She is an adorable bundle of sweetness and love. She also has Prader-Willi Syndrome (PWS), a rare and complex genetic disorder that sporadically occurs in 1-in-15,000 births.
PWS is the most common known genetic cause of life-threatening obesity in children. People with PWS never experience feeling full, so they constantly want to eat.
Typical characteristics of PWS include low muscle tone, developmental delays and short stature (if not treated with growth hormone). They also have many complex and unique medical issues.
The symptoms of PWS are believed to be due to dysfunction of a portion of the brain called the hypothalamus. The hypothalamus is a small endocrine organ at the base of the brain that plays a crucial role in many bodily functions, including regulating hunger and satiety, body temperature, pain, sleep-wake balance, fluid balance, emotions, and fertility. Although this hypothalamic dysfunction is thought to lead to the symptoms of PWS, it is not yet clear how the genetic abnormality causes hypothalamic dysfunction.
Kendall already has faced many challenges in her young life – and unfortunately will face many more.
There is no cure for PWS. Kendall will never outgrow it – and will never be able to live on her own, unless a “cure” is found for the ever-present hunger.
Facing a future with no available cure
“It was immediately apparent that Kendall was not like our other two children – Layken and Taryn. She did not cry, she did not move her arms or legs, she did not act like a typical newborn. She was floppy, unresponsive, and had no desire to eat. Everyone was concerned – but unfortunately, no one had any answers.”
And then, three days after Kendall’s birth – at 4 a.m. on February 19 – just as JennaLee was dozing off in her hospital bed, the overnight nurse abruptly knocked on her door. “She had a look of panic in her eyes as she told me that she needed me in the nursery right away,” recalls JennaLee. “When I walked through the door of the nursery, I saw my beautiful baby lying there – completely gray. I cannot explain to you the fear that immediately took over my mind. I silently cried as I rocked her, thinking this could possibly be the last time I held my baby alive.”
Kendall was immediately flown to the Sanford Health NICU (Neonatal Intensive Care Unit) in Sioux Falls, South Dakota.
Adds, JennaLee, remembering those mind- and emotional-numbing days of revolving doctors, “We had several doctors in-and-out of our room within the first few days. They asked Clint and myself, ‘Does she look like the rest of your family?,’ ‘Did your other kids have hair like this?,’ ‘Are her eyes dark or light?'”
About one week later, following visits from the Neonatal Specialist teams, Geneticist, Endocrinologist, Opthamologist, and Neurologist, the couple received the diagnosis. JennaLee explains, “Kendall has a Type 2 deletion of the 15th chromosome, which is consistent with Prader-Willi Syndrome. We were honestly relieved, while this was of course not the best case scenario, we also felt this was most definitely not the worst case scenario.
“Over the course of the rest of the month, Kendall received physical therapy, speech therapy (feeding) and had a surgery to place a G-Tube before we were able to go home. She has had many minor complications since being home but is stronger, more active, and most importantly – happy.”
Couples, families together to support one another
The Marcys contacted Prader-Willi Syndrome Association (PWSA) USA and received tons of up-to-date information. They also gave the parents a glimpse of hope for Kendall’s future.
Additionally, Clint and JennaLee are fortunate to have another set of parents on which to learn – and on whom to lean. Dennis and Reva Hulzebos, also of Mountain Lake, faced the same challenges when their daughter and youngest child, Kelsey was born with PWS in 1986.
Kelsey was able to achieve her goal of graduating from Mountain Lake Public High School in 2005, but the many complex and unique medical issues connected with PWS took her life on November 3, 2008 at the age of 22.
During her short life, Kelsey was able to accomplish so much more than she was expected to, and long the way, touched the lives of many people in the process. As a sixth-grader at Mountain Lake Public Elementary School, Kelsey and PWS were the focus of a special lyceum for students, led by – who else – Kelsey herself. At Mountain Lake Public High School, she was a member of FCCLA (Family, Career and Community Leaders of America) and enjoyed attending Wolverine sporting events.
When she passed away, she was working in medical records at Windom Area Hospital through the auspices of MRCI, and was taking online college classes for medical records. Every fall she would collect as many Monarch caterpillars as she could and watch them spin their cocoons, turn into butterflies – and fly away.
As well, she looked up to her older sister, Amberly and older brother, Travis; celebrated the addition of sister-in-law, Shawna; was a special auntie to her nieces Karina and Kayleigh and loved her peekapoo, Pebbles.
Walking for PWS research
In honor of Kendall – and in remembrance of Kelsey – a fundraising walk/run for PWS research -“Pace Yourself for PWS” – will be held this Saturday, September 26, at Lawcon Park in Mountain Lake. Walkers and runners will head out on their first step at 11 a.m.; registration starts at 10 a.m. The cost is free; but requested is a free will donation towards “One Small Step” research on PWS.
The walk/run will be held along the pathways of the Mountain Lake Trail. Both adults and children are encouraged to participate.
A sack lunch will be provided at the end of the walk/run. There will be children’s games to play – and popcorn as well.
This fundraiser is organized and sponsored by Jessica Blom, Jaque Niss-Radtke, Jada Hampel and JennaLee Marcy.
As JennaLee notes, “This is an exciting time for PWS research as they have made several breakthroughs in understanding it’s complexities. We are ready to start making a difference towards finding treatments for our ‘peanut” – and all the others suffering from the complications of PWS. Please help her have the ability to dream of a future – without limitations.”
One hundred percent of all of the fundraising will go directly towards the Foundation for Prader-Willi Syndrome Research. “This fundraising will help support PWS research, Kendall – any other infants that receive this diagnosis – and their families,” attests JennaLee.
Families, friends and a community linked together on a pacesetting path of action towards progressive PWS breakthroughs.
