The brave boy living with rare skin disease epidermolysis bullosa

Mason White first appeared on our sofa as a baby in May, 2010. Suffering from a genetic illness called EB that causes his skin to blister and tear at the slightest touch, the future was uncertain. Children like Mason are often referred to as 'butterfly children' because their skin is as sensitive as the wings of a butterfly.

But even though he is in constant pain, nothing gets in Mason's way. He joins us today - 10 years on, to show how he is living life to the full, and we’ve another inspirational guest waiting to surprise him!

In May 2010, Mason's dad explained to Eamonn and Ruth how difficult life was for Mason, "It's been really hard, it's completely changed our lives in every way."

Ten years later, Mason joined us alongside his mum Kerry to show us that he hasn’t let his condition hold him back. Mason is at the top of his class and participates in lots of sports at school, "I do everything in PE, they try and adapt it".

Eamonn asked how sore Mason’s condition is each day, and Mason admitted he was in pain, and his whole body was bandaged, "Everywhere on my body except my neck up".

Kerry explained how tough it was for everybody, "As a parent you want to take the pain away from your child, or anything. You're helpless as a mum, because it's there, you live with EB, you can't take it away. All you can do is make their life as comfortable as possible, look after them as well as you can, and provide memories, and give him the life he deserves."

She continued, "I see his dad pop blisters, and cut bits of skin off his body - every day, three to four hours a day in the medical room. You've got to stay strong. You can't cry. You need to stay strong, because if he sees you upset... If you're not strong, what's that doing for your child?"

The condition also affects Mason internally. His mum explained that his oesophagus has blistered, which meant he coughed up the lining of his oesophagus when he was a baby, causing internal blistering. Any acid or reflux will also blister his oesophagus, so he is now fed through a tube in his tummy although he’s able to eat tiny amounts.

Pride of Britain winner Mo, 20, who suffers from the same condition, joined them on the sofa. Mo’s parents were told he wouldn’t necessarily make his first birthday and his advice to Mason was: “You’re not alone.”

Mason’s mum finished the chat with a message to her son, “I think because he’s positive, it keeps us positive and his outlook on life is amazing. We’re just so proud of him as a family.”

What is EB?

Epidermolysis Bullosa (EB) is a group of genetic skin conditions that cause the skin to blister and tear at the slightest touch.

Painful open wounds and sores form where this exceptionally fragile skin is damaged – in some cases, internal linings and organs are also affected. Complications as a result of secondary infection and extensive scarring are factors that people living with EB often have to face.

DEBRA, the national charity that funds research and healthcare to support individuals and families affected by Epidermolysis Bullosa estimate that more than 5,000 people are living with EB in the UK, and 500,000 worldwide.