Tripp Roth, the toddler who suffered from epidermolysis bullosa, has died

Tripp Roth, from Ponchatoula, Louisiana, the toddler whose brave fight against an excruciating skin disorder prompted a worldwide crusade to battle the illness has died.

Two-year-old Tripp Roth outlived all medical predictions during his battle with junctional epidermolysis bullosa, which caused his skin to blister at the slightest touch.

The toddler died in his mother’s arms on Saturday.

His mother, Courtney Roth, 26, in a blog entitled “EBing a Mommy”, wrote of her son’s passing: “My precious angel received his wings today. I have had many nightmares about having to write this post.

“He was exactly 2 years and 8 months old. It happened within minutes of me picking him up out of bed and rocking him. He took his last peaceful breaths in my arms, in his most favorite spot,” she continued.

On Sunday, a motorcade drove through Tripp Roth’s home town in tribute to the youngster, WWL TV reported.

Dozens of friends and family members organized “Ride for Tripp”, which grew in numbers as they drove down Ponchatoula’s Highway 22, escorted by police, red balloons reaching to the sky.

“Baby Tripp is an inspiration to all of us. He has touched everybody’s lives in this small town,” said Lerai Lucas, a family friend who helped organize the tribute.

Elsewhere, messages of condolence flooded a Facebook page paying tribute to the toddler, entitled “Prayers for Tripp”, where more than 39,000 have followed updates on the young boy’s condition.

Courtney Roth, who took time off from her nursing career to care for her son around the clock, began her blog three months after baby Tripp was born.

There, the mother gave insight to those unfamiliar with the life-long genetic disorder Epidermolysis bullosa, which affects 1 in 50,000 people.

Tripp Roth suffered from junctional EB, which affects around 1% of those with the disease.

When Tripp Roth was born he had just one small blister on his head and a few on his back, and doctors immediately diagnosed him with the condition. The toddler was missing a protein that binds one layer to another, which meant could not even bathe without taking powerful sedatives.

Tripp Roth struggled with breastfeeding because of the sores in his mouth so doctors used a feeding tube instead.

The condition meant any friction could cause sores and scars across his skin, his eyelids, the upper esophagus and inside his mouth.

Eventually, it claimed his sight.

With no cure, doctors suggested toddler’s mother to keep him wrapped in bandages to protect his delicate skin.

Tripp Roth had not been outside for a year, and was not expected to live longer than that.

Medical experts say many babies with the condition die after developing infections or from breathing problems after blisters develop in the respiratory tract.

In an earlier interview with ABC News, Courtney Roth proudly said how her son had “astounded” his doctors.

“He is just amazing. I have always said that from the beginning,” Courtney Roth continued.

The mother, too, had her own brave fight: “I have never been sad around him and I try not to cry around him. We’ve made it to where he is in the happiest environment possible. His spirit and personality are what keep me going,” Courtney Roth told the network.

Tripp Roth’s funeral will be held Wednesday at St Joseph’s Catholic Church in Ponchatoula.

What is Epidermolysis bullosa?

Epidermolysis bullosa (EB) is a severe genetic skin disorder that affects one in 50,000 live births.

Skin is made up of two layers; the outer layer is the epidermis and the inner layer is the dermis. In healthy skin, proteins hold the two layers together so they do not move separately.

In those born with EB, the layers do not have the protein that holds them together. It means that any movement that creates friction between the two layers creates blisters.

Tripp Roth suffered from junctional EB, which affects around one per cent of those with the disease.

He was not expected to live past a year; many babies with the condition die after developing infections or from breathing problems after blisters develop in the respiratory tract.

Blisters can develop anywhere on the skin, and the mouth and eyes are particularly susceptible to the sores. Heat exacerbates the condition.

Some sufferers are born with blisters but others will develop them in the first few weeks of their life.