21/12/2011 12:36 GMT | Updated 22/05/2015 10:12 BST

Why Two Year-Old Tripp Can't Have A Christmas Cuddle From His Mum

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One of the best things about Christmas morning is getting a cuddle from your kids after they've opened their presents.

But it's a simple joy denied Courtney Roth.

Her two year-old son, Tripp, suffers from an excrutiatingly painful skin condition that causes his skin to blister with even the lightest of touches.

The toddler, from Ponchatoula, Louisiana, U.S. suffers from junctional epidermolysis bullosa, which his supporters call 'the worst disease you have never heard of'.

It has claimed his sight and speech, and means any friction can cause sores and scars across his skin, his eyelids, the upper oesophagus and inside his mouth. With no cure, doctors can only advise his mother to keep him wrapped in bandages to protect his delicate skin.

Due to the life-long genetic disorder, which affects 1 in 50,000 people, his skin is missing a protein that binds one layer to another.

But Tripp, who has not been outside for a year, has outlived all medical predictions. 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.

"He certainly astounded his doctors," Courtney, 27, told ABC News. "He is just amazing. I have always said that from the beginning.


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 has received support from thousands of well-wishers through her blog and a Facebook page, Praying for Tripp, which has more than 30,000 members.

They have put together a video montage of Tripp's life since he was born to raise awareness of the truly terrible disease.