Jill Hawkins said that she and her Mercer Island family often feel alone.
Two of the Hawkins children, Cooper, 10, and Charlotte, 15, have an ultra rare genetic disorder called FAM177A1, which causes intellectual disability, autism, epilepsy and more. The family knows of only a few other cases of the disease, which has no treatment available.
“It’s a lonely journey. It’s a lonely place to be. It’s really challenging, and a lot of medical providers, they don’t know a lot about rare diseases, but yet they impact a huge number of people,” said Jill, noting that rare diseases affect more than 25 million Americans.
The Hawkins family became a little less isolated when the local Parks clan entered their world.
Over the last year, Jill has formed a close friendship with Islander Effie Parks, whose 4-year-old son, Ford, has CTNNB1 syndrome, a rare disease causing global developmental delays. Jill learned about Effie from a Reporter article, became an avid listener of her “Once Upon a Gene” podcast about rare diseases and the pair bonded.
They empowered each other and generated an enthusiasm for getting the word out to the Island community about Rare Disease Day, which will take place Feb. 28 and is sponsored by the National Organization for Rare Disorders. The interest in the “Show Your Stripes” campaign has grown immensely since the friends began discussing rare diseases with business owners and others in their town.
“It made me feel like my kids matter, their journey matters and that we’re not alone in this. That we’re supported,” Jill said.
Added Effie: “Our local community of Mercer Island rallying around and showing up to support Rare Disease Day has taken my breath away. Rare disease can be so isolating and when others are curious and help us shine a light on those impacted, it can change everything.”
The city has embraced the families and was set to issue a proclamation for Rare Disease Day at the Feb. 16 city council meeting.
On the business front, a host of local spots will be offering free zebra-striped masks beginning Feb. 20. The Mercer Island Chamber of Commerce has helped lead the campaign, which will feature the following businesses: Au Courant, Barrels, Cascade Frames, Clarke & Clarke Art + Artifacts, Hair Excel, Island Books, Island Treats, Mercer Island Athletic Club, Mercer Island Florist, Mercer Island Pediatrics, Performance Kitchen, Salon 106, The Boutique Lounge and The Home Collaborative.
“I have been just so pleased and really amazed at the level of engagement from the businesses and from the community and the city. It’s been really encouraging and heartening to see how people have (become) really interested in this campaign,” said Jill, noting that the zebra is the symbol for rare disease awareness.
Laurie Givan, executive director of the chamber of commerce, said the businesses didn’t hesitate to join the campaign and are looking forward to helping raise awareness.
“Our businesses are truly a part of our community and value being asked to be one of the support systems for events and organizations that are helping others on Mercer Island,” she said.
Mercer Island High School junior Nash Hawkins gathered some friends to stuff 500 zebra masks and information cards into bags for Rare Disease Day. Nash feels lucky to have a supportive group of friends in his corner who love his siblings.
“It feels good to be spreading awareness just so these families feel like that they can get heard and people understand what they’re going through,” he said.
Added Nash’s pal Jacob Tomaselli: “I feel honored that I get to help out with this whole cause.”
For more information, visit https://rarediseaseday.org/