This Boy Can't be Hugged Because His Skin Falls Off

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This Boy Can't be Hugged Because His Skin Falls Off

 

35-year-old Victor Nava and 36-year-old Adriana cannot hug their son Adrien too tightly because his skin would severely blister, reports Emma Brazell of the UK’s highest-circulating newspaper Metro. The Nava family knew something was wrong with their child when he was born “violently screaming,” shaking, and in “unbearable pain” at Saint Joseph Hospital in Orange, California. 

They were transferred to the Children’s Hospital of Orange County, where Adrien was diagnosed with “a severe form of Epidermolysis Bullosa,” a condition that causes sores akin to third-degree burns. It can be fatal considering the estimated mortality rate of 87% during the first year of life. Hence, Victor and Adriana cherish their son “everyday, every month.” Doctors at the hospital stated that Adrien was the “worst case they had ever seen.” 

 

 

Photo Credit: Victor Nava (via Metro)

 

Adrien’s pain was controlled “with a combination of morphine and Tylenol.” He also took antibiotics to “try and prevent infection from his open wounds.” Victor tells Metro, “When Adrien was born on May 14, 2019 we were full of joy, the nine months of waiting for his arrival had finally arrived. Soon after birth everyone was choked to see how sensitive Adrien’s skin is, sensitive like a butterfly’s wings.” 

Victor and Adriana took the newborn home, admitting that each day is a “rollercoaster.” “It’s not easy doing and going through everything we’ve gone through in such a short time. I get depressed, sad, I cry just thinking ‘why, why him’,” Victor says. It’s not easy for the couple, as they hardly get any sleep, eat healthy, or have energy to play with Victoria, their first child. 

 

 

Photo Credit: Victor Nava (via Metro)

 

“Adrien’s RDEB demands lots of attention to detail. Any wrong move can cause an injury,” Victor notes. Victor and Adriana have been warned that their son’s condition “will be a lifelong struggle.” 

The Nava family created a GoFundMe page to enable people to help them pay Adrien’s medical bills. Victor notes, “Every month the cost to ensure Adrien’s health is between 15k and 16k and this is not possible without everyone’s help.”

 

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