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Central Indiana mother pressing for testing of deadly genetic disease

Posted at 8:47 PM, Jan 30, 2020
and last updated 2020-01-31 13:54:29-05

Correction: A previous version of this story incorrectly spelled the full name of the genetic disease. RTV6 regrets the error.

INDIANAPOLIS — Autumn Ford had never heard of adrenoleukodystrophy. Not many have — only 1-in-17,000 people are born with it.

Ford had her children tested when her family lived in Connecticut where the state had just added the deadly genetic disease, also known as ALD, to its newborn screening panel.

Her fourth child, Shepherd, had the test first when he was born.

"He was the first that came up with it," Ford said. "Then we tested his older brother, Ransom. And he had it."

Ford said she cried when she learned both of her boys and one of her girls were carriers of ALD.

"To me, it was a death sentence at that point," Ford said. "You go on Google and you get worst case scenario. You see all the pictures of the boys dying and their moms."

The disease, which most severely affects boys, causes children to lose all neurological functioning: sight, vision, ability to hear, until eventually they're in a vegetative state and ultimately die.

"They think it's ADD, let's treat ADD. Let's get him glasses," Ford said. "Maybe he needs a hearing aid. And by the time you get to the point where you know it's bigger, because now you're having eyesight and hearing problems, it's bigger than this, it's most the time too late."

Ford said it is a problem that Indiana doesn't screen for ALD at birth. It is the only test recommended by the United States Department of Health and Human Services the state doesn't screen for, so families have no way of knowing until the disease progresses too far.

"I am walking around grocery stores and I see little boys and I'm like he could have it and they don't know," Ford said.

However, Rep. Ryan Lauer, R-Columbus, is trying to change that with a bill that passed unanimously out of the House and is now being considered by the Senate.

"If we catch it early, they can have a full and normal life. And that's what I'm trying to accomplish this session with the bill on ALD is protecting our newborn infants," Lauer said.

Ford said making sure kids get tested for the disease is about giving children a chance.

"There's hope because you get to know ahead of time that they have it. You get to screen for it. You get to have MRIs, bloodwork. You get to keep them safe. They have a chance now," Ford said. "It needs to happen. It has to happen."

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