One of the joys of every parent is in being able to
hold their new baby close. Sadly this cannot be
the case for Kadyem, 22, and Kyera, 20, the first
time parents of a baby born on December 28 with
a rare incurable disease which makes his skin
peel off when touched.
Baby Kaheel Clark-Smith was diagnosed at birth
with Epidermolyosis Bullosa (EB) after he was
born with small blisters on his arm, but the
doctors dismissed it as a mild case and sent him
home, however, he had extreme breakout days
later that resulted in blisters and the loss of 60%
of his skin and that was when it was discovered
that he has the worst case of the disease.
Kaheel's parents, who are unable to cuddle or
kiss their baby, are raising funds to fly their son
to a specialist EB centre in Ohio since the
hospital where their son was born in Seattle,
Washington has very little experience in handling
such case.
Khaleel's aunt, Brandi Smith, revealed the extent
of the trauma these new parents and their child
are having to deal with;
"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," She said.
"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.
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.
"We just got back the results from the biopsies
and have been told it's the worst type of EB."
Brandi started a GoFundMe page to help raise
$30,000 for the medical flight to get the baby to
the care of experts in Ohio and also for the
expensive special clothing and bandage needed
to wrap Khaleel.
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