23 January 2017

Heartbroken parents unable to cuddle their three-week-old son because his skin will fall off

WARNING Graphic images: Kaheel Clark-Smith was born with an incurable disease that means his skin could peel off if his parents touched him


The little boy’s blisters have gotten progressively worse (Photo: Caters)

A baby boy was born with a rare incurable disease that means a cuddle from his parents could cause his skin to fall off.

Kaheel Clark-Smith was diagnosed with the condition after being born with small blisters on his arms.

But now at three-weeks-old, the poor tot has lost 60% of his skin – and is so fragile, a small touch could peel his skin away.

And his distraught parents Kadyem, 22, and Kyera, 20, can’t even hold their little boy, who suffers from Epidermolyosis Bullosa (EB), for comfort.

EB is a rare genetic disorder that causes the skin to blister and burst, leaving raw sores that are susceptible to infections.

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The little tot is so fragile he can’t be properly cuddled by his parents (Photo: Caters)

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The rare incurable disease causes his skin to fall off when he is touched (Photo: Caters)

The family are fundraising money to have him flown to a specialist EB centre on the other side of the country.

Kahleel’s aunt, Brandi Smith, said: “This is their first child and they are so overwhelmed and broken.

“We found out the day he was born and didn’t know anything about it. We had to do all the research at home.

“We found out this was the ‘worst disease you’ve never heard of’ and we were so heartbroken.

“Even a cuddle or a kiss can cause his skin to blister.”

Kahleel was diagnosed the day he was born on December 28, but at first doctors thought it was a mild case and sent him home.

Brandi said: “The doctors gave us false hope because he was eating and all his vital signs were fine.

“Then he had a bad breakout and he was admitted to NICU on Jan 4th.

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Little Kahleel suffers from the painful disease, seen here (Photo: Caters)

“We just got back the results from the biopsies and have been told it’s the worst type of EB.”

Little Kahleel took a turn for the worst last week and developed a staph infection that he currently recovering from.

The new family have been unable to leave the hospital in Seattle, Washington for nearly two weeks.

Brandi added: “The hospital had never seen a case like it and there was a lack of understand on what to do and it seems to have gotten worse.

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His parents can’t cuddle their newborn boy because of his condition (Photo: Caters)

“We want to try and get them to an EB centre in Ohio, where all the family is, but insurance won’t cover the transfer.”

Brandi started a GoFundMe page to raise the $30,000 it costs for the medical flight to get the tot to EB experts.

She added: “The money will also cover the expensive special clothing and bandages for Kahleel, as well as medical supplies and room and board for the travel.”


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