7-Month-Old Wears Build-A-Bear Clothes After Rare Dwarfism Diagnosis
When Jenevieve Cook takes her baby out on walks, people have a lot of questions.
“They think that he was just born,” Cook told WLKY of her seven-month-old son, Matthew. “We get, ‘Was he just born five minutes ago?’ or, ‘Was he preemie?’ or, ‘Why is he so small?'” It’s true that Matthew was born prematurely, but this little guy is facing even more issues than that.
Matthew was only one pound, two ounces when he was born and he spent more than three months in the NICU. Then he was diagnosed with microcephaly, which is a condition caused by abnormal brain development that makes the head smaller than normal. Doctors initially told the Cooks that Matthew’s brain had stopped growing completely.
But three months later, that diagnosis was reversed. Tests showed that Matthew actually had MOPDII, a rare form of primordial dwarfism. “We were told Matthew would walk, he would talk, he would go to school, he would just be extraordinarily small,” Cook told WLKY.
People living with primordial dwarfism sometimes aren’t diagnosed until they’re three years old, and there may be as few as 100 people in the world with the condition.
Much of Matthew’s clothing comes from toy stores like Build-A-Bear because he’s so tiny.
Matthew’s new diagnosis gives his parents hope, but he’s not out of the woods yet. This month, he faces surgeries for moyamoya, which is a progressive cerebrovascular disorder caused by blocked arteries at the base of the brain.
His family has set up a GoFundMe page to help raise awareness and pay for his surgeries. Hang in there, Matthew! It sounds like you’re in great hands.
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