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7-year-old Davian Navarro was diagnosed with adrenoleukodystrophy earlier this year.

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OGDEN — Until very recently, 7-year-old Davian Navarro was enjoying a relatively normal childhood.

The Ogden boy loves to go to school, play with his friends and skateboard, according to his mother, Jessica Gillard. He also loves Halloween and has designs on dressing up as both Spider-Man and a Philadelphia Eagles football player this year.

Davian’s life changed forever this summer, though, when he was diagnosed with a rare genetic disease — adrenoleukodystrophy, or ALD — which causes progressive neurodegenerative decline.

“He started having some behavior issues at school, and those kind of came out of nowhere because he hadn’t had that before,” Gillard told the Standard-Examiner. “Shortly after that, he started regressing in school. The things that he had once learned, he couldn’t remember how to do them anymore.”

Davian also started having difficulties walking and communicating, and he now suffers from seizures as well.

ALD is caused by a mutation in the ABCD1 gene of the X chromosome which can lead to a progressive loss of white matter in the nervous system and the degradation of the adrenal glands. The disorder affects just 1 in 20,000 to 1 in 50,000 individuals globally, according to the National Center for Biotechnology Information.

Gillard and Davian’s father now find themselves struggling to cope with the reality of their son’s terminal illness. Gillard was forced to quit her CNA job to care for her child.

“We never would have ever imagined that that’s what his issues were,” Gillard said. “It’s like it all came really suddenly, and shocking, and just to find out that there’s no cure for it at all, just certain medications can try to help him, but it will never be cured.”

A bone marrow transplant could potentially slow the disease’s progression. However, there’s also a chance that it could leave him in a vegetative state, Gillard says.

“Anything that he lost prior to the transplant, he would never get back, but it wouldn’t progress,” Gillard said. “But he’s already progressed too much before we found out the diagnosis, so that doing a bone marrow transplant for him right now would not be very safe. Like, it could take away the rest of his senses.”

While the family weighs the pros and cons of a transplant, treatment options including the drug leriglitazone, which is being studied as medication for progressive cerebral adrenoleukodystrophy, or cALD, are being explored.

“I’m aware that he’ll never be back to how he was before, but I’m hoping that it can slow it down so that he can still have some sort of quality of life and be here with us longer,” Gillard said.

As it stands, Davian would have to stay in a hospital in Paris, where he also would be given a year’s supply of the drug; a GoFundMe campaign raising funds for that purpose is ongoing. There also will be a fundraiser at Dar’s bar — located at 240 Washington Boulevard — on Nov. 9.

In the meantime, Davian is still attending school through a special program and trying to do the things that make him happy.

“He still plays with his brothers and he likes to jump on the trampoline. He still laughs and tries to have a good time,” Gillard said. “It’s definitely not how he was before, but he’s not just laying around thinking like that. He still is trying every day to show us that he’s still here, still strong.”

And his parents grapple to determine the best course of action with the hope that they can give Davian his best possible life.

“He’s going to try the medication in Paris and if he does well on it and he improves or he stays stabilized where he’s at, then we can talk about the bone marrow transplant again,” Gillard said.

“It’s still an option, but we aren’t ready to choose that right yet.”