Mother of baby with rare dwarfism: 'There is nothing wrong with just being different'

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Saturday, October 29, 2016
Baby diagnosed with rare form of dwarfism
When baby Matthew makes an impression, many think he is a newborn -- but the 7-month-old actually suffers from a rare form of dwarfism.

LOUISVILLE, KY (KTRK) -- When people meet baby Matthew, they think he is a newborn. In reality, Matthew, who weighs only three pounds, is actually seven months old.

When his mother, Jenevieve Cook, was pregnant, doctors noticed Matthew wasn't growing properly and she was induced after only 28 weeks.

At birth, Matthew weighed just one pound, two ounces.

After 98 days in the NICU, the family went home with an unclear diagnosis.

"Before we got discharged, they said he had microcephaly at that time," Jenevieve told WLKY-TV. "We were told Matthew would not live very long."

But two months later, results from an exome test revealed Matthew's true diagnosis: MOPD Type 2.

"We were told Matthew would walk, he would talk, he would go to school, he would just be extraordinarily small," Jenevieve recalled.

The family has been traveling to Delaware for specialized treatment. They're now in California for two skull surgeries in hopes of preventing further strokes and brain aneurysms, which are common in people with this condition.

"We do get a lot of people who are encouraging and they're kind, but we also get a lot of people that are just beyond belief and they're shocked when they see him," Jenevieve said.

Matthew has two older brothers. The family tries to make his life as normal as possible -- and they share his story in the hopes of teaching others that being different isn't a bad thing.

"Matthew will be just like everybody else, he'll be it there throwing the ball like a regular kid. He's just extra small, there is nothing wrong with just being different."