But with the help of a little polyester stuffing in an elephant or ostrich or other genetically improbable fantasy creature, the Gene Giraffe project manages to make a kid’s day a little easier at the pediatrics clinic at UnityPoint Health — Trinity Regional Medical Center.

At the same time, though, the project manages to raise awareness for kids with rare diseases. That cause is what has kept founder Doug Passow doing this for the last five years.

The annual event was started to honor his niece, Ava, who died from GM1-gangliosidosis. The inherited disorder progressively destroys nerve cells in the brain and spinal cord, leading to muscle weakening, enlarged organs, seizures and other disabling symptoms.

Now, the events will also honor his nephew, Jackson, who died this week from the same condition at age 2.

-Messenger photo by Elijah Decious
The Gene Giraffe Project provides over 100 stuffed animals each year to be given out to kids visiting the doctor to raise awareness of rare pediatric diseases. Laila Hickey, 9, left, and Kinley Hickey, 7, hold their stuffed animals.

“Funny how things work sometimes,” Passow said in the pediatrics clinic, dropping 120 stuffed animals off before heading to visitation.

“It’s more about the joy for them,” he said. “It’s our way, for kids who have rare diseases, to give a sign to show they’re not really alone. There’s someone out there.”

In addition to making doctor’s visits something like an indecisive trip to the candy store for parents, the event has branched into other recurring events: there will be a Rare Glow Run in June and a golf tournament in August at Lakeside Municipal Golf Course. All funds support the Ava and Jackson Passow Memorial Scholarship, given to students at Fort Dodge Senior High, Manson Northwest Webster and St. Edmond who have dealt with an unusual life experience, special needs in some capacity or those going into nursing and social services fields.

Rare Disease Day occurs every year on the last day in February. It was created by NORD (National Organization of Rare Diseases) to raise awareness for rare diseases. Diseases are considered ‘rare’ in the U.S. if the disease affects less than 200,000 people.

There are around 7,000 rare diseases, with new ones being discovered every day, affecting over 30 million Americans — about 1 in 10 people. Children are hit particularly hard, accounting for half of those with a rare disease.

-Messenger photo by Elijah Decious
Pediatric clinic staff at UnityPoint — Trinity Regional Medical Center prepare to give stuffed animals away to patients with the Gene Giraffe Project. From left to right: Amy Coleman, Alexandra Adam, Julie Bars, Angie Hickey, Emily Cue, Ashley Mundie, Breanna Case, Nicole O’Tool, Dr. Sankalan.

Rare diseases account for 35% of deaths in the first year of life.

Since it was founded, the Gene Giraffe Project has provided care packages and funding for families in Iowa, Illinois and Minnesota. In addition to toys and hair bows, it puts together care packages of whatever a family might need.

For more information, visit genegiraffe.org.