‘My angel received his wings today’: Toddler who inspired thousands with brave battle against excruciating skin disease dies in his mother’s arms

Tender: Courtney Roth, 26, smiles adoringly at her laughing son, Tripp. The two-year-old who battled with junctional epidermolysis bullos died in her arms on Saturday

Tender: Courtney Roth, 26, smiles adoringly at her laughing son, Tripp. The two-year-old who battled with junctional epidermolysis bullos died in her arms on Saturday
‘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’

The toddler whose brave fight against an excruciating skin disorder prompted a worldwide crusade to battle the illness has died.

Tripp Roth, from Ponchatoula, Louisiana, outlived all medical predictions during his battle with junctional epidermolysis bullosa, which caused his skin to blister at the slightest touch.

The two-year-old boy died in his mother’s arms on Saturday.

Oh, mum! Courtney leans in to give her beloved boy a kiss

Oh, mum! Courtney leans in to give her beloved boy a kiss

Courtney put her nursing career on hold to care for her boy

Courtney put her nursing career on hold to care for her boy

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, speaking of her grief.

All smiles: The youngster gazes at the camera with his Ernie and Bert toys beside him

All smiles: The youngster gazes at the camera with his Ernie and Bert toys beside him

Two candles atop a huge tractor cake marked the boy's second birthday

Two candles atop a huge tractor cake marked the boy’s second birthday

Tripp Roth, from Ponchatoula, Louisiana, who died on Saturday

Tripp Roth, from Ponchatoula, Louisiana, who died on Saturday

Fighter: The disease which Tripp had affects one in 50,000 people. It means skin is easily
blistered and scarred by touch and heat

On Sunday, a motorcade drove through his home town in tribute to the youngster, WWL TV reported.

Dozens of friends and family members
organised ‘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 organise 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.

Pain: Two-year-old Tripp Roth, pictured with his mother Courtney, suffers from a severe skin disorder, junctional epidermolysis bullosa, which leaves his skin blistered at the lightest of touches
Messages of condolence
have 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

Tribute: On Sunday, a motorcade drove through the small town of Ponchatoula, Louisiana in memory of the youngster

Tribute: On Sunday, a motorcade drove through the small town of Ponchatoula, Louisiana in memory of the youngster

The 'Ride for Tripp' motorcade grew in size as more and more motorists joined it as it made its way down Highway 22

The ‘Ride for Tripp’ motorcade grew in size as more and more motorists joined it as it made its way down Highway 22

The youngster poses with a baseball, catcher's mitt and baseball bat. His hands are covered to stop him scratching himself

The youngster poses with a baseball, mitt and baseball bat. His hands are covered to stop him scratching himself

‘I just read the story of your brave
strong young man. It truly touched my heart,’ one reader wrote. ‘You and
your little boy made such an impact on so many. May you find comfort in
the fact that he is pain free…’ another wrote.

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, she gave insight to those
unfamiliar with the life-long genetic disorder Epidermolysis bullosa,
which affects 1 in 50,000 people. Tripp suffered from junctional EB,
which affects around one per cent of those with the disease.

When he 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. Tripp was missing a protein that binds
one layer to another, which meant could not even bathe without taking
powerful sedatives.

Tripp Roth, from Ponchatoula, Louisiana, who died on Saturday

Severe: Tripp, who lost his sight because of the scars on his
eyelids, breathed with the help of a trachea tube

Tripp Roth, from Ponchatoula, Louisiana, who died on Saturday

Tripp Roth, from Ponchatoula, Louisiana, who died on Saturday

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

tripp

When Tripp 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.

He 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 his mother keep him wrapped in bandages to protect his delicate skin.

He 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.

WHAT IS EPIDERMOLYSIS BULLOSA

Epidermolysis bullosa 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 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.

Happy: Tripp's mother Courtney, pictured, said the toddler's spirit and personality keep her going

Happiness: Courtney Roth said her son’s spirit and personality kept her going

In an earlier interview with ABC News, Ms Roth proudly said how her son had ‘astounded’ his doctors.

‘He is just amazing. I have always said that from the beginning,’ she continued.

She, 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,’ she told the network.

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

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