One Local Family’s Resilience Shows Need for Awareness in Missoula
Have you ever heard of Angelman's Syndrome? Probably not. When I met Crystal Parker, I certainly hadn't. Her journey in both learning about the condition and educating others, including some physicians, has been a long one.
Crystal's son August was diagnosed with Angelman's Syndrome. August is nonverbal, needs assistance to walk, and has complex seizures.
"It was almost like he had narcolepsy," Crystal says, "with the way he kept falling asleep during activities. School was concerned. Physical, Occupational and Speech therapists were concerned. We were concerned."
When Parker took August to the emergency room she was told that his seizures were not "emergent" and that they couldn't help. Fortunately, a hospitalist admitted August for an overnight EEG. He was then sent to the Sacred Heart Children's Hospital in Spokane, where he was diagnosed with ESES (Electrical status epilepticus).
"If we had not pushed, I can’t imagine the situation my son would be in now."
The Angelman Walk 2023
These challenges are partly what has inspired Crystal to help educate the public about Angelman Syndrome, a genetic disorder that affects the nervous system. The Angelman Walk, which will be Saturday, June 10 at the Missoula Fairgrounds this year, is an important fundraiser for families who are dealing with the challenges that come with Angelman's Syndrome.
Despite being rejected by many childcare facilities and the full-time care that August requires, Crystal says that the experience has helped her and her family.
"I truly believe August’s diagnosis has made everyone of us better people. We are more patient, more understanding and more kind. This whole journey has taught us what is important in life and how the small things really don’t matter."
While there are many opportunities to give in Missoula, sometimes, causes like the Angelman Foundation don't receive as much attention, especially when they aren't local, even though local families are affected.
"I know so many people in Missoula like to reserve their donations/sponsorships for local organizations, but the Angelman Syndrome Foundation is small and intimate enough, that the money goes to families like mine who struggle to find the help they need locally. They also purchase equipment and safety beds for kids like August who don’t sleep and need to be safely contained when they wake up at night. Insurance does not cover safety beds and so many other equipment needs. Families like mine rely on the Angelman Syndrome Foundation."
If you'd like to help out kids like August consider donating or joining this year's Angelman Walk.