Condition: Prader-Willi Syndrome
City, State: Talent, OR
Club: Talent Middle School Sparrow Club Service Hours: 343
Date Adopted: 12/04/2018
Everen's Story:Everen was born on December 7, 2017. All seemed well at first, but things quickly descended into a foggy dark world of uncertainty. His cry was so weak that it was almost a whisper, he didn’t move much, and he didn’t suckle. After 24 hours, nurses took him to the NICU and placed a feeding tube in his nasal passage, and attached sensors to monitor his oxygen, respiration, heart rate, and blood pressure. He was placed in an incubator, and began his three-week stay at Asante Rogue Regional Hospital.
The team of nurses and doctors were very attentive but grew more and more concerned as the days passed with little improvement. Everen was listless and almost motionless. He only opened his eyes for several minutes a few times a day, and made soft whimpering sounds.
Over several weeks many blood tests were done by specialists, including reflex testing, blood tests, heart monitoring, cat scans, ultrasounds, and complete genetic testing, called microarray analysis. At first, everything came back negative, yet after two-weeks doctors delivered news that no parent wants to hear. Everen’s genetic tests came back positive for a condition called Prader-Willi Syndrome (PWS).
PWS is a very rare non-heredity, spontaneous genetic disorder, caused by the absence of vital genes on the 15th chromosome. The missing genes are the blueprint for a vast array of bodily and cellular functions. This lack of genes causes problems that affect a person’s hormonal regulation, and many systems of the body.
Everen is just a baby, but has already faced a great deal in his short life. He was fed through a feeding tube for six months, and works hard to overcome low muscle tone. He takes daily medications, has various types of weekly therapies, and will have several surgeries in the near future. He has many medical appointments and he will need a lifetime of care and support.
Everen and his family are on a long journey that has them discovering the strength within as they rise to life’s challenges with an open heart.
Despite everything, this precious little boy brings joy and love into every moment. He is calm, affectionate, curious, playful, determined, and independent.
Everen will be adopted as a Sparrow to Talent Middle School. Students at Talent will work hard to raise money for Everen through sponsored community service and fundraising projects.