6-Year-Old Boy Who Looks Like Benjamin Button To Get Surgery For Rare Disease

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6-Year-Old Boy Who Looks Like Benjamin Button To Get Surgery For Rare Disease


Although we've all heard of the Academy Award-winning film, The Curious Case of Benjamin Button, not many people are aware that there's a rare condition that's making on six-year-old boy look like the titular character.

This disease is called Ehlers-Danlos syndromes, and Yernar Alibekov was diagnosed with the disease only one month after he was born.

Although there are various forms of Ehlers-Danlos syndromes, the youngster from Kazakhstan's severe condition has deteriorated to the point where his skin has drastically sagged - all before he learned how to walk.

Described by Genetics Home Reference as "a group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues," Yernar's physicians first saw signs he suffered from the disease when he was born with saggy eyelids, which he couldn't stop scratching at.

Yernar's mother Zibensa Tulepbergenova said although individuals under the age of 18 aren't typically permitted to undergo a skin graft surgery, her son was given an exception by a local hospital in the city of Astana.

While Yernar could have waited years to have the operation for free, his family raised 112,000 KZT ($310) in an effort for the little boy to have a better quality of life.

However, not everybody believes this procedure will work.

'This is a rare disease that happens to one in 50,000. The fact that the boy had surgery won't improve his skin condition - if it is saggy it won't change," Dr. Olga Loseva reportedly said, according to The Sun.

"The only way out is to mitigate consequences of this disease and take great care of him."

Although Ehlers-Danlos syndromes can lead to a person experiencing an organ rupture or developing osteoarthritis, scoliosis, chronic pain, and joint dislocation, it's not the same as  Hutchinson-Gilford progeria syndrome (HGPS), which causes the body to age at a rapid pace.

Have you ever heard of Ehlers-Danlos syndromes before? Let us know in the comments!

[H/T: The Sun]

Maya has been working at Shared for a year. She just begrudgingly spent $200 on a gym membership. Contact her at maya@shared.com