Cape Elizabeth family raises money for The Iris Network after sons diagnosed with rare condition
The Strouts are hoping to pay back the organization they've come to rely on
The Strouts are hoping to pay back the organization they've come to rely on
The Strouts are hoping to pay back the organization they've come to rely on
A Cape Elizabeth family has created a fundraiser to help pay back the organization that they’ve come to rely on.
Nikki and Taylor Strout are the faces behind Rugged Seas, a company that’s as tough as the fishermen they serve.
But beyond the rough exterior, the Strouts soften and light up when you ask them about their three boys.
“Our youngest is, I know I’m his mom and I know I’m biased, but he's the happiest,” Nikki Strout said. “He's just the happiest little boy.”
Two years ago, when their youngest was only seven months, Nikki Strout said they noticed his left eye was turned in. They went to a specialist in Portland who sent them right to Boston.
“They took him to the operating room, he was so young they had to put him to sleep to do the testing they had to do,” she said.
In a one in a million chance, their son was diagnosed with a genetic condition that causes vision loss typically within the first two decades of life.
“I think he’s one of the youngest people with ARB, autosomal recessive bestrophinopathy,” she said.
A difficult diagnosis made harder when they tested their other boys and their oldest will also lose his vision because of the same disease. Nikki Strout said she felt like she was drowning, alone without help.
“Research is happening but it will be years and years before it's anything offered to our children,” she said.
But then they found some light. The Iris Network in Portland became a beacon.
“We serve people who are blind or visually impaired with ways to make their lives as full and productive as possible,” said Regal Naseef, the director of development and communication.
Serving some 30,000 people in Maine, the network is one of the oldest nonprofits in our state.
“I think I always knew I wanted to thank them for what they've done for our family and this just felt like the right thing to do,” Nikki Strout said.
“They had our backs as soon as we needed it and we figured we could use our platform to have theirs,” Taylor Strout said.
Bringing their fishing community to their new community, the Strouts are working with 320 Ink in Westbrook to make shirts that say “fish” in braille.
All of the proceeds will benefit the network.
“We consider them to be part of The Iris Network family and we’re all in this together,” Naseef said.
The Strouts said they don’t know what’s ahead for their boys.
“That’s the hardest part to swallow, I think — the not knowing, but we know that we will raise them to be as independent and as strong as active as possible that’s what fishing breeds and grows in people, start them right there on the water," Nikki Strout said.
The Strouts' fundraiser closes on Wednesday night at midnight. You can find a link to it through their website or click here.