Many people are drawn to babies because of how small and adorable they are. Strangers who would normally pass by without a word stop in their tracks, compelled to say something about the tiny humans they find so irresistible. But 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 adorable little guy is facing a lot more problems than just that.
Doctors first noticed Matthew was not growing properly when Cook was pregnant with him. She was induced at 28 weeks with Matthew weighing just one pound and two ounces when he was born. After spending 98 days in the neonatal intensive care unit (NICU), he was finally discharged but with a tragic diagnosis: doctors said he had microcephaly, a condition in which a baby's head is smaller than expected. As a result, doctors said he wouldn’t live long.
She said they were also told his brain had stopped growing. “We were told not expect value of life,” Cook told WLKY. However, nearly three months later, an exome test that revealed that he actually has a rare condition called microcephalic osteodysplastic primordial dwarfism type two (MOPDII). “We were told Matthew would walk, he would talk, he would go to school, he would just be extraordinarily small,” Cook told WLKY.
His parents are obviously thrilled that they will be able to see Matthew learn to walk, talk, and live his life. He will be able to do anything anyone else can, he will just be extra-small. Even now, at seven months old, he only weighs a little over three pounds. He wears primarily doll and stuffed animal clothes, with many of his clothes even coming from a Build-A-Bear, since even premie clothes are too big for him. Matthew's new diagnosis gives his parents hope, but he's not out of the woods yet.
Matthew is now in California undergoing treatment for moyamoya, which is a progressive cerebrovascular disorder caused by blocked arteries at the base of the brain, a disease common in those with the condition, according to the station. The disease causes him strokes and seizures and expensive surgeries are required to counter the narrowing brain vessels in Matthew’s skull that are thinning and cutting blood flow. Doctors will do this by creating new pathways for blood to flow to the brain, although doing so comes at a great risk.
His family is hoping the surgeries will “create new path ways to try to get blood to the brain.” Now Matthew’s parents are hoping to raise money to help pay for the travel they need to do for their son’s surgery in California. A GoFundMe page was set up to help fund these trips and has so far raised $4,100 of its $10,000 goal. “You would be part of something that will give our son a longer life,” a note said on the page.
“We are trying to raise enough money that we are able to continually travel for [Matthew’s] medical appointments. He is due for two surgeries this month. We have two older boys as well so money is starting get tight with being out of work and traveling for Matthew.”
"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. His family, including Matthew's two older brothers, is trying to ensure his life is as normal as possible. “Matthew will be just like everybody else,” Cook said. “He'll be out there throwing the ball like a regular kid, he's just extra small, there is nothing wrong with just being different.”
Despite his small stature and the procedures he’s had to endure, Matthew’s future is bright. His family loves him dearly and is looking forward to providing him with a life that’s just like any other boy’s. What a precious, little boy. He’s lucky to have such loving parents and family. If you’d like to help out this brave little family, you can donate to their GoFundMe page or follow their Facebook page, Matthews Page: A fight for survival.
This month is also Dwarfism Awareness Month. 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.