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‘When You’re Holding Him, It’s Like God Is With You': Baby Doesn’t Look Sick but Has Incredibly Rare Disease

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"He’s probably having a seizure as we speak."

TJ Willis was diagnosed with a rare disease that will likely become fatal. (Image source: WMAQ-TV)

Just looking at Thomas James "TJ" Willis in his mother's arms, you probably wouldn't notice anything different about him. He seems to be like any other baby.

But the 5-month-old actually suffers from a rare and likely fatal condition and, as you're looking at him, he's probably experiencing a seizure that you can't see.

TJ Willis was diagnosed with a rare disease that will likely become fatal. (Image source: WMAQ-TV) TJ Willis was diagnosed with a rare disease that will likely become fatal. (Image source: WMAQ-TV)

Despite spending two weeks in the neonatal intensive care unit, it wasn't until TJ was 4 months old that he was diagnosed with Menkes Kinky Hair Disease, a condition that has complications far worse than a funky hairdo.

According to the National Institutes of Health, the genetic disease affects copper levels in a person's body and symptoms include a failure to gain weight and grow, deterioration of the nervous system, weak muscles, seizures, intellectual disabilities and, yes, kinky hair. The federal health organization states that most children with this disease do not live beyond 3 years old, but some treatments, if given early enough, can have positive effects.

Why is copper important to health?

"Copper can build up in the small intestine and kidneys, but low copper levels in other areas can affect the structure of bone, skin, hair and blood vessels, and interfere with nerve function," the NIH stated.

In TJ's case, WMAQ reported that his diagnosis likely came too late for some treatments to be effective.

“TJ doesn’t look sick, he doesn’t look like he’s struggling or anything, but he’s probably having a seizure as we speak,” Judy Cobb, TJ's grandmother, told WMAQ. “When you’re holding him, it’s like God is with you.”

Although devastated by the diagnosis and the fate her son is likely to face, Darcy Willis said she chose to "try to pull us through this" instead of of focusing on her sadness. She blogs about her son's condition in the hope that it will help raise awareness about the disease that affects an estimated 1 in 100,000 newborns.

Image source: WMAQ-TV Image source: WMAQ-TV

"I love you little guy! Let your faith be bigger than your fears," Willis wrote on her blog.

Watch WMAQ's report:

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