Infant with Rare Genetic Disorder Lost 60 Percent of Skin in 3 Weeks; Family Raising Funds for Treatment

Kahleel Clark-Smith was born with blisters on his arms. 3 weeks later, the infant have lost 60 percent of his skin. Clark-Smith was diagnosed with epidermolysis bullosa, a rare genetic disorder. The child's parents and relatives are raising funds to have the infant flown to a specialist EB center.

According to the Daily Mail, epidermolysis bullosa is a rare genetic disorder that makes the skin fragile. Epidermolysis bullosa occurs just once in every 17000 child birth. While children with epidermolysis bullosa can lead an almost-normal life, any friction to the skin, even a cuddle or a kiss, causes painful blisters.

At the moment, there is no cure for epidermolysis bullosa and the treatment for this rare disease only aims at preventing the blisters from becoming infected. Children with this condition are sometimes dubbed as "butteryfly children" since they are delicate to touch.

According to the Kadyem and Kyera, parents of Kahleel Clark-Smith, their baby was diagnosed with epidermolysis bullosa last December 28, 2016, the same day that baby Kahleel was born. However, the doctors at the Naval Hospital in Bremerton, Washington sent the new family, with the newborn child in tow, home after concluding that it was only a mild case.

The infant had a breakout and was then admitted to the NICU on January 4, 2017. Needless to say, the parents were heartbroken when they found out that what Kahleel have is the worst type of epidermolysis bullosa based on the results of the biopsies.

Kahleel developed a staph infection last week that prevented the Clark-Smiths from leaving the hospital for almost two weeks now. According to Brandi Smith, Kahleel's aunt, the "hospital has never seen a case like it and there was a lack of understanding on what to do. Brandi Smith says "it seems to have gotten worse" noting that his nephew has been fighting fever due to the infection.

In another report, Brandi Smith reveals that they want to transfer Kahleel to an epidermolysis bullosa Center in Cincinatti, Ohio, but their insurance declined to cover the transfer cost. In lieu of this, Brandi Smith created a GoFundMe page to raise funds for the Kahleel's medical flight from Washington.

According to Brandi Smith, they aim to raise US$ 30,000 to cover the cost of the medical flight, the expensive special clothing and bandages for Kahleel, and the room and board for the travel. Kahleel is the first child of Kadyem and Kyera.