This Boy's Dwarfism Makes Him One In A Million

BarcroftTVPublished: November 16, 2017129 views
Published: November 16, 2017

Levi Krystosek from Ocean Springs, Mississippi, is an 11-year-old boy with a rare form of dwarfism, which makes him one-in-a-million. Levi’s condition is called Jansen's Metaphyseal Chondrodysplasia, which affects the growth of bones and causes considerable pain, meaning he is only 38 inches tall.

At just eight days old, doctors told Levi’s parents, Dona and Joseph that their son was probably going to die. Determined their son would survive, the Krystoseks had to feed Levi every two hours just to try and build up his strength.

Then when he started school, Levi failed Kindergarten twice and was put into a special needs class. But in fact, all Levi needed is to sit in front of the class and have his sheets blown up for him, because of his optic nerve atrophy, an effect of JMC. He has finally caught up with his peers in third grade, catching three school years in one, and is now in 5th grade.

Because there is such a low number of genetically confirmed cases of JMC there is limited information on it. Dona and her family are actively involved with the Jansen’s Foundation, which not only bring together those who also have the condition but also to <a href="" target="_blank">raise awareness</a> and push for more research.

There are only approximately 30 known cases of JMC in the world, and five genetically confirmed cases in the US.

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