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Family heartbroken over son's rare, degenerative disease

By Heather Simonsen, | Posted - May 24th, 2015 @ 10:55pm

9 photos

WEST VALLEY CITY — Landon Caputo, age 3, smiled while his 5-year-old sister, Izzy, pushed him on the swing. For years, his medical problems were a mystery.

"It's heartbreaking," said Ashley Caputo, Landon's mother. "There's no other way to describe it. Every day our heart break just a little bit more."

He has infantile neuroaxonal dystrophy — an extremely rare, inherited neurological disorder that affects axons, the part of the nerve cell that carries messages from the brain to other parts of the body, according to the NIH.

It's a slow, devastating progression. As a baby, he seemed fine. When he wasn't walking at age one, they worried and took him to see a doctor. With therapy, at 18 months he was doing thing they'd hoped — taking a few steps, talking a little, and then it all began to fade.

"There is so much I wanted to do with him, too," said Joseph Caputo, Landon's father. "Knowing what he has, he won't be able to do it. It's heartbreaking."

At 2 and one-half years old, he could no longer sit up, crawl, or talk at all.

Just last month, he got a motorized car for his birthday and could press a button on the steering wheel to make it go, but no more.

There is no cure or treatment for the disease.

But Landon is still smiley and happy. His parents and big sister are enjoying him to the fullest.

"We don't have any expectations. We're just going to have celebrations for Landon," Ashley said.

There is so much I wanted to do with him, too. Knowing what he has, he won't be able to do it. It's heartbreaking.

–Joseph Caputo, Landon's father.

They're making happy memories, while not giving up hope.

"Landon's taught me to be grateful for every single moment we have with him," she said.

Researchers are looking for the defective gene that causes the disease in hopes of developing drugs that can stop it.

The Caputos travel to Minnesota this week to meet with specialists.

If you'd like to help with medical expenses visit *, or to send a kind word go to their Facebook page, "Our Sweet Baby Landon."

* does not assure that the monies deposited to the account will be applied for the benefit of the persons named as beneficiaries. If you are considering a deposit to the account, you should consult your own advisors and otherwise proceed at your own risk.


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