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A Way for Will: Story City couple seeks a cure for their son's rare disease
Ames Tribune - 3/24/2021
Four-year-old Will Feldman has a genetic disease so rare it doesn’t even have a name. Scientists and the families of the kids affected simply call it SLC6A1, a reference to the affected gene that causes the illness.
Nate and Whitney Feldman of Story City first noticed some developmental delays with Will when he was 5 or 6 months old.
“He had an eye roll that he would sometimes do, and at first we just thought he’d learned at an early age to roll his eyes at his parents,” Whitney Feldman said. “But when we took Will for an EEG (electroencephalography test), we found out he was having seizures — a hundred seizures a day, sometimes dozens in just an hour.”
It took years of doctor visits and testing to finally get a firm diagnosis, and in March of 2020, the Feldmans learned their “spunky, silly and sweet” Will has SLC6A1.
“Will is a super fun, cheerful guy who loves to make people smile and laugh,” Nate Feldman said.
A huge Cyclone fan (especially football, where he got to be a Kid Captain this season), Will received messages from his favorite players, Brock Purdy and Breece Hall, for his fourth birthday.
“William is definitely all boy,” his mom said. “He’s a rough-and-tumble boy.”
He loves sports, Mickey Mouse and his little brother and sister, James, 3, and Elizabeth, 10 months.
With only one other reported case in Iowa — a little girl in Bondurant — and fewer than 100 cases worldwide, the support network for SLC6A1 has been challenging, especially during COVID-19.
“We haven’t even been able to meet the family in Bondurant because of COVID,” Whitney Feldman said. “But we’ve talked to them a lot and that has helped.”
The Feldmans have received support and information from SLC6A1 Connect, a Colorado-based website started by Amber Freed, the mother of Matthew, who also has the conditioin.
The Feldman family has also received support and encouragement from many friends, family members and local business owners. A group of friends is organizing a fun run, “A Way for Will,” which will raise money to help find a cure.
With a 5K and 3K, the race will be held at 2:30 p.m. Saturday, May 15, at North Park in Story City. The entry fee is $25, and the kids run is free. Registration is available at www.awayforwill.org.
Following the fun run, snow cones will be available, and the Story City Antique Carousel will be open for rides.
Corporate sponsorship opportunities are also available for the fun run. Contact organizers through the A Way for Will website for more information. The website accepts donations and also features vendors who offer merchandise with a portion of the proceeds going to the cause.
All of the proceeds from the race will go directly to funding research.
A team of doctors and scientists at the University of Texas Southwestern in Dallas is working on a cure.
Once it receives FDA approval, the cure will likely be a single injection that will target and replace the malfunctioning part of the gene, said Nate Feldman, who is a dentist in Ames.
“We are so grateful for the diagnosis,” Whitney Feldman said. “It’s been challenging and it was truly heartbreaking to get the news, but at least we know what we’re dealing with now and can find ways to help Will.”
Some of the common symptoms of SLC6A1 include physical limitations, autism, mild to severe intellectual disabilities, speech delays, behavioral issues and epilepsy.
The whole family went on the Keto diet, nutrition that helps Will’s symptoms. He is in the pre-school class at Roland-Story.
Will regularly meets with a host of physicians to help with different aspects of his disease.
“We’re in a race against the clock because now that we know William is actively having seizures, we fear that one could lead to developmental regression and alter his life path forever,” the Feldmans said in a statement.
The possibility of gene replacement therapy gives a sense of hope to the Feldmans and other families touched by SLC6A1.
“It’s not a matter of if the cure exists,” Whitney Feldman said. “It’s a matter of when it will be created and made available. We just have to keep working toward a cure. We don’t have another option.”
This article originally appeared on Ames Tribune: A Way for Will: Story City couple seeks a cure for their son's rare disease
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