Often called the worst disease you’ve never heard of, an Orange County newborn is suffering from a rare and painful skin disorder, and at just 10 days old, doctors say Adrien Nava already experiences levels of pain many will likely never know.
At Children's Hospital Orange County, doctors have only seen a handful of these cases.
Adrien suffers from epidermolysis bullosa, a rare genetic skin disorder that causes painful wounds, blisters and sometimes infections. In the most severe cases, it can be fatal.
Victor Nava says his son’s disorder was discovered at birth.
"We had a baby shower, we had everything ready for him. Some of the things we can’t use them." Clothes that rub too much or put pressure can cause blisters.
There is no cure for the condition, only pain management and wound care.
"It makes the skin very fragile and brittle," said Dr. Michel Mikhael, a neonatologist at the hospital. He is one of at least 10 doctors at treating Adrien. "It’s a lifelong condition that needs a lot of resources, support and complex medical needs."
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Adrien’s arms and legs are covered in bandages where his blistering skin is the most severe.
Eating, bathing and diaper changes can also hurt Adrien.
This constant medical care and indefinite hospital stay are costly and an added stress for Nava, who is out of work to be with his son and his wife Adriana.
"As a parent you get concerned that you won’t have the funds for it," Nava said.
Nava has been asking for support online and says people around the world are responding.
On Friday Adrien’s family met Ariana Covarribios, a 19-year-old college student who also suffers from the condition.
"I just wanted to show them that it is possible, even though right now it’s really rough, they can overcome it."
The Navas are learning how to minimize the excruciating pain Adrien faces, but they know this will be a lifelong struggle.
"We just have to be careful."
The family has set up a GoFundMe account to help with Adrien's care.
