Amber Gambill’s son has a disorder so rare, only a handful of people in Iowa have it — because it only occurs in one out of 10,000 people.

But thanks to the Gene Giraffe Project, Gambill doesn’t feel alone in Fort Dodge.

Gene Giraffe is holding a 5k Run/Walk for rare diseases this Sunday, with registration starting at noon at John F. Kennedy Memorial Park.

The walk is a fundraiser, but also an important chance to connect with each other, said Doug Passow, of Clare. He founded the project a few years ago in honor of his niece, Ava Passow, who died of a rare disease.

“Ava’s birthday is the 26th. She’s the inspiration behind the project,” Passow said. “It’s kind of a birthday celebration, but it’s more about the faces of the foundation.”

Brecken Gambill, 6, was diagnosed with Williams syndrome when he was 6 months old.

“It is a genetic disorder kind of like Down syndrome. He is missing 26-28 genes on chromosome 7,” Amber Gambill said.

It’s not really that much like Down syndrome, she explained; but since Williams syndrome is largely unknown, that’s the easiest way to explain it to people.

“He has learning difficulties, developmental delays, as well as mild heart defects,” Gambill said. “He was nonverbal until around the age of 4, but has really come a long way. With feeding, he can only eat purees because of muscle weakness and also due to sensory issues. He is currently learning how to chew and swallow and to be OK with certain food textures.”

The family’s pediatrician ordered a genetic test when Brecken was 6 months because he wasn’t gaining weight, Gambill said.

“Everything kind of connected after that. We were already doing thereapy, we were already seeing a lot of doctors, therapists, that was the final piece,” she said.

“Your dreams go away. It takes your dreams away. But you realize new dreams,” Gambill said. “And they’re just as important as the dreams you had; it’s just a whole different ball game.

“Then you realize your new normal. Because going to therapy three times a week is not ‘normal,’ but it is for kids who have disorders. Doctors appointments are normal.”

When Brecken turned 3, Gambill attended her first Williams syndrome walk in Omaha.

“Before that I felt like I didn’t have any support here in town or anywhere,” she said. “Then we got hooked up with families at the walk, which kind of opened doors. But there’s nothing around.

“The most important thing, when I got hooked up with Doug and the Gene Giraffe Project, it opened my eyes to support within our community. Williams syndrome is so rare I know just a handful of people in Iowa. But here we have five stories of people just here in Fort Dodge.”

Those five people have a variety of rare diseases, Passow said, and placards with their stories will be featured at the walk.

There’s Penelope Coleman, who was born with a rare congenital disorder called long-gap esophageal atresia (EA). This means her esophagus didn’t connect to her stomach during utero, making her unable to eat by mouth at birth.

Ava Passow and her younger brother, Jackson, were both born with GM1-Gangliosidosis, an inherited disorder that progressively destroys nerve cells in the brain and spinal cord. Ava died at age 3.

“I started this,” Doug Passow said of the Gene Giraffe project, “because somebody had to start it.

“It’s pulling everybody together.”

The project’s funds go mostly to care packages, he said. While Ava was in the hospital in Minnesota, a nurse there put a new bow in her hair every day.

“So we got excited. If she could put one little bow in Ava’s hair, we are going to make a difference in another child’s life,” said Doug’s mother Barb Passow. “So we send care packages to kids unexpectedly. We may ask a parent or a family member. We make a gift basket, and we’ll send it out to that child. If it makes their day bright for five minutes, that’s what we want to do.”

Bows are also sent to the local hospital, Doug Passow said, as well as toy cars and coloring books. There’s also a delivery of teddy bears to the hospital every February for Rare Disease Day.

The project also raises awareness to promote research. Rare diseases get zero funding from the government, Doug Passow said.

The run is a new event for Doug Passow. Gambill was instrumental to organizing this; she held a run/walk at Kennedy last year for Williams syndrome.

Another new event coming up is a Festival of Lights, which will be held Nov. 26 to Dec. 1 at Shimkat Motors Co. Businesses will decorate and donate Christmas trees, which can be purchased for a donation of $150 to Gene Giraffe.

Any trees that are not purchased will be delivered to families who otherwise could not afford a Christmas tree.

Gene Giraffe 5k Run/Walk for rare diseases

Registration noon, run starts at 1 pm. Sunday

John F. Kennedy Memorial Park

$20 per person, includes T-shirt

For more information visit

GeneGiraffe.org or Facebook.com/GeneGiraffeProject