Three NJ brothers share rare disease, perseverance to move forward

A local family is dealing with an unimaginable struggle, one that might test anyone's resolve: all three of their sons have the same rare genetic disorder, and there's no cure. Fox 29’s Joyce Evans spent some time with them.

Jenny and Chad Potter Sr. had no idea they were carrying the same recessive genetic disorder. They had never even heard of it. Still, the odds were low that even one child would be affected.

But patience, perseverance and a lot of prayer are helping them keep up with three busy boys.

Chad Jr., 12, Matty, 9, and five-year-old Nolan Potter are all blind, but there’s so much more to these three. The boys have Alström syndrome—not even a thousand cases are diagnosed around the world.

The list of symptoms is long and devastating, and the Potter boys are already showing all but a few of them. All of the boys are in liver failure.

Chad Jr. has been going through the worst of it. His parents first saw a bobble in his eyes. At five-months-old, he was in heart failure, and his parents almost lost him.

"Chad had seizures. Horrendous, horrendous seizures. The other boys [were] never affected by seizures,” Jenny told Fox 29.

Still, all of the boys lost sight by age five.

Jenny and Chad Sr. say keeping up with the meds, treatments and constant testing for each boy is challenging, and quite expensive. And there's much more to come.

"It's really hard, hard to think about the future for the boys. What may be and what we may be facing,” Jenny said.

But they keep it positive and keep it moving, learning how to do normal things differently.

"We're different, but we're the same. Our boys are like other boys, and Chad and I are just a mom and dad,” Jenny said.

Fox 29’s Joyce Evans made an observation of the family:

“You look at them like they're all three miracles,” she told the family.

“They are,” Jenny said. “And we learn from them every day."

Of course, none of this is possible without a great support system, loving family, supportive schools and an uplifting church family.

Friends and church members of the Fellowship Alliance Chapel in Medford, New Jersey have set up a GoFundMe page to help the Potters with their ever-growing expenses.

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