STORY CITY, Iowa – It’s almost been two years since Will Feldman was diagnosed with a condition so rare, it doesn’t even have a name. The devastating news has since turned into determination for his parents to find a cure and ‘A Way for Will.’
Will is like any other typical five-year-old boy.
“He wants to play with his friends. He wants to be outside. He likes to play sports,” his mom, Whitney Feldman, said.
But there’s something behind those glasses that impacts his life in a big way.
“He was a perfect little newborn baby. No problems,” Whitney said. “And then at about five months old, we started to notice he was kind of falling behind in meeting some of those milestones.”
The Feldmans started looking for answers by going to different doctors and specialists.
“We had a lot of people telling us like he’s fine, you know, he’s just a little delayed, he’ll catch up,” Whitney recalls, “but it just didn’t feel right. That didn’t feel like the right answer. I don’t know how to explain it.”
A mother’s instinct took over and genetic testing gave the Feldmans the answer they were looking for.
“So there’s a lot of information and a lot of unknowns, but the thing that families always remember, they remember the day that their child’s delay was given a name,” Dr. Nate Noble, medical director of Blank Children’s Developmental Center said.
On March 27, 2020, Dr. Noble diagnosed Will with SLC6A1. It’s a neurological condition so rare it’s named after the gene it affects. The Feldmans say it causes Will to have dozens of seizures everyday.
“And when he [Dr. Noble] called us, he kind of said, ‘Don’t know much other than what I’ve just read here in this report. There aren’t very many kids that have this disorder. Do some Google searches, see who you can find. See if you can find some support groups and let’s do what we can to give him a good quality of life,’” Whitney said.
So the Feldmans started searching again and found Amber Freed, another mom in Texas whose son Maxwell was diagnosed with the same disorder.
“I received their email I still remember at like 8:00 p.m. on a weeknight and there was just something about their tone that I just knew what this family was going through,” Freed said.
Freed founded the organization SLC6A1 Connect, to not only raise awareness about the disorder but funds for a cure. She says four to seven million dollars are needed to get research completed and FDA approval for gene replacement therapy.
“Because it’s such a rare disease, pharmaceutical companies don’t really care about it,” Nate Feldman, Will’s dad, said. “It’s not profitable for them to get this cure pushed through or any sort of medication. So that falls back on the families that are affected, and the communities that are involved.”
It made Whitney Feldman decide to leave her job and focus on fundraising full time.
“So you sort of go through, I don’t know, almost a grieving process of finally getting your answer but being sad that that’s what your answer is to then this determination of what are we going to do? You know, we have to help our kid however we can,” Whitney said.
She created the platform ‘A Way for Will’ to tell their story, and people have reached out from across the country.
“We can’t even express the gratitude.” Whitney said. “It’s just been, how do you thank somebody for sacrificing for your child?”
While the pandemic has slowed financial efforts and shot down progress in the labs, it did allow Will to participate in a clinical trial for a drug. And since it ended, the Feldmans say Will has been seizure-free.
“And now that we are not constantly in fear of William and his seizures, we can concentrate on that fundraising,” Whitney said. “And once that’s done, it’s just going to be the most joyous, carefree moment. I just, I’m so excited.”
For now, the Feldmans are enjoying the healthiest their five-year-old has ever been and their ‘Way for Will’ feels within reach.
“We’re lucky that we have hope.”
There’s a lot that goes on with the management of Will’s disease: doctor’s appointments, therapy sessions, genetic counseling, the list goes on.
The good news is that more than $3 million have already been raised to help fund the cure, according to Freed.
If you’d like to help ‘A Way for Will’ click here.