CLARE – A nervous child lights up when a nurse hands her a plush cat while she waits to see the doctor. A smile quickly appears on her face as she hugs the stuffed animal.
That’s the goal of the Gene Giraffe Project, which has donated more than 1,000 teddy bears and other stuffed animals to the UnityPoint Health pediatric clinic in Fort Dodge over the past eight years.
Every year, around Rare Disease Day – the last day of February – Doug Passow, the founder of Gene Giraffe, brings about 100 or more stuffed animals to the clinic for the clinic to distribute to all patients who visit that day. until they run out of animals.
The organization and annual event was started in honor of Passow’s niece, Ava, who died of GM1 gangliosidosis. The inherited condition gradually destroys nerve cells in the brain and spinal cord, leading to muscle weakness, enlarged organs, seizures, and other debilitating symptoms.
Ava is not only the inspiration behind the mission of the organization, but also the name.
“She slept with a rainbow giraffe when she was alive,” Passow explains.
The Gene Giraffe Project now also honors Passow’s nephew, Jackson, who died of the same condition at age 2 last year.
“I started it mainly because there are a lot of kids here with rare diseases,” Passow said. “It’s more about bringing connectivity to the area.”
He said that for many families with children with rare diseases, it is difficult to find local support outside of a doctor’s office.
“You don’t really have anyone to talk to,” he said.
That was his goal with Gene Giraffe: to spread awareness and support for children with rare diseases.
“It’s to comfort them, but mostly to tell those kids we see them no matter what they’re fighting,” Passow said.
Giving away hugs to pediatric patients isn’t all Gene Giraffe does.
Passow is working with Manson Northwest Webster High School’s industrial technology program to build two ADA-accessible picnic tables that will be donated to UnityPoint Health – Trinity Regional Medical Center and the Paula J. Baber Hospice Home.
The organization also hosts a golf tournament and other fundraising events to raise money for personalized care packages and grants.
Passow sends one or more care packages to children with rare diseases near Iowa each month — all customized to the child’s needs and interests.
The Ava and Jackson Passow Memorial Scholarship is given to students at Fort Dodge Senior High, Manson Northwest Webster High School, and St. Edmond Catholic School who have had an unusual life experience, special needs in one capacity or another, or those attending the nursing and social services are taking off.
For more information about the Gene Giraffe Project, visit www.genegiraffe.org.
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