Wish granted for London boy living with 'butterfly syndrome'

Wish granted for London boy with rare syndrome A Syrian refugee with a rare condition that gives him fragile skin has been granted his Make a Wish request. Sean Irvine reports.

A London boy whose skin is fragile to the slightest touch has received an early Christmas present.

Amin Alahmad, 10, was granted a wish by the Make-A-Wish Foundation.

Amin suffers from epidermolysis bullosa, also known as butterfly syndrome. It affects less than three births per million.

He lives with painful, blistering sores, and in the namesake of his condition, copes with skin that is fragile like butterfly wings.

But in a welcome change this week, Amin felt only elation after the Make-A-Wish Foundation visited his family home.

“You’ve qualified for a wish, so that means you get to fulfil your wish,” stated a representative.

While physically jumping for joy, a family friend asked Amin where he would like to go.

He quickly responded, “Disneyland, Disneyworld!”

While the details of Amin’s wish are to be determined, he knows his ask is a possibility.

"I don’t know what to say, I’m so excited!” Amin shared.

The process to grant a wish began over two years ago with Martha Macrae.

She aided Amin's family as they transitioned to Canada from war-torn Syria. It was not long before she became determined to secure his wish to go to a Disney resort.

“I’m sure they’ll be on every single ride and swim in every single pool,” she told CTV London.

Macrae hopes to do the same for Amin’s cousin, Tim. He also suffers from butterfly syndrome which is often inherited.

Earlier this year, she spurred a community campaign to bring Tim and his parents to Canada for treatment.

Since then, the families have merged in a south London home close to LHSC Victoria Hospital. There, Amin and Tim receive care from a specialist in pedantic dermatology.

Macrae sayid the shared residence also makes home care more feasible.

“All four parents are really hands-on. They know how to care for the wounds and the dressings and the feeding. It’s like being in a little mini hospital here.”

This is why, for Amin’s parents, a potential trip away is a needed respite for them, Amin and their other four children.

“It's good to take a break. He [Amin] has a difficult disease and we need some rest,” confirmed his father Mustafa.

Both parents are thankful Make-A-Wish and Macrae have worked together to make their son beam with joy.

It is a trait not out-of-character for Amin.

In a news story about his cousin earlier this year, he won over viewers with a comment about the power of love.

This week, he got some love back.

“That’s good. That’s nice!” he reiterated while again jumping for joy.