Doctors said Matthew wouldn’t live, but a new diagnosis changed everything

When seven-month-old Matthew meets someone new, they almost always think he’s only a few days old. Matthew was born with microcephalic osteodysplastic primordial dwarfism type two, a rare condition characterized by skeletal abnormalities, short stature, and microcephaly (small head size). It is caused by a genetic mutation, which each parent must carry one copy of.

“They think that he was just born. We get, ‘Was he just born 5 minutes ago?’ Or, ‘Was he preemie?’ Or, ‘Why is he so small?'” Jenevieve Cook, Matthew’s mother, told WLKY.

When Cook was pregnant, doctors became concerned about Matthew’s size. He didn’t appear to be growing properly, and at 28 weeks gestation the decision was made to induce birth. Matthew was born weighing one pound, two ounces and spent 98 days in the Neonatal Intensive Care Unit before being sent home, still without an official diagnosis other than microcephaly. Doctors told his parents that Matthew wouldn’t live very long, and if he did, he would likely never have a typical life.

However, further testing offered a new diagnosis and hope. At two months old, Matthew’s parents learned he had a rare form of dwarfism and that the future wasn’t the grim picture doctors had painted.

“We were told Matthew would walk, he would talk, he would go to school, he would just be extraordinarily small,” Cook said.

His parents, along with his two older brothers, are doing everything they can to help Matthew be successful and healthy. He is receiving specialized treatments and doctors are working to prevent the strokes and brain aneurysms which are common with his condition. He has already suffered from some, but his family and the medical team are working to help him. He is undergoing surgeries to help get more blood to his brain since his brain vessels are narrowing and cutting off the flow of blood.

“He is a blessing and he has a way of bringing the best out in people,” his family said of him on their fundraising page.

Matthew is still smaller than most newborns, weighing less than four pounds, but he is living a busy life full of travels, surgeries, and support from near and far. His family plans for him to have a normal life.

“Matthew will be just like everybody else. 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,” said Cook.