There are over 7,000 rare diseases in the world, but there is one that is very familiar to two particular families here in the PV District.
The Green and Staab families both have children who are affected by Angelman Syndrome. They take this syndrome like a champ and do not let it defy them. Dempcee Green, 16, is a freshman here at Pleasant Valley High School and Gavin Staab, 9, is a third grader at Pleasant View Elementary.
Angelman Syndrome affects 1 in every 12,000-20,000 families. It is caused by a loss of a part of the 15th chromosome which is derived from the mother. Some symptoms include developmental delays, seizures, a happy demeanor and sleep problems.
Natalie Green, mother of Dempcee, always knew there was something different with her daughter but wasn’t sure what. “Dempcee has always been developmentally delayed, but she had a severe seizure at 1 and 1/2 years old one morning that caused her to be rushed to the hospital and then airlifted to Peoria, IL. Her heart rate was over 200. She stayed there for a week and then we were referred to Iowa City to investigate what possibly caused the seizure. From genetic testing, Dempcee was diagnosed with Angelman Syndrome.” she stated.
Having a special needs child can be scary but also eye opening.
Green has always been her daughter’s greatest supporter and has learned so much from her and her disorder. Being a special education teacher at United Township High School, she has seen this first hand. “Professionally, I have grown a much better understanding of individuals with special needs and also for their parents. It’s definitely one thing to be their teacher, but to be able to see it from the parent and student perspective is eye opening.” she said.
When looking at the rareness of this disorder, there are not many families in the Quad Cities that experience Angelman Syndrome firsthand. When Jeff and Julie Staab found out their son had this disorder, they felt very confident that they would bring it close to home someday. “We participated in our first ASF walk in May 2014 in Naperville, IL. After that day, Julie told Jeff, ‘someday we will do this in Bettendorf’… that ‘someday’ is May 16, 2020.”
The annual Angelman Syndrome Walk will be held on May 16 in Bettendorf, Iowa at Crow Creek Park. This is the biggest fundraiser for Angelman Syndrome around the country. The Staab and Green families would appreciate your attendance to the walk to show your support for this disorder.
Stephanie Mudd • Feb 29, 2020 at 8:13 pm
My friends