'I had a decision to make. I can either be swallowed by my grief or I can take that energy and use it to help other families.'
"Buying a 3 foot six inch coffin is at the bottom of every parent’s things to do list. Five months ago, my kindergartner, Emmett, took his last breath."
I had a decision to make. I can either be swallowed by my grief or I can take that energy and use it to help other families.“He lost not only the ability to walk, but also the ability to sit up on his own. He lost the ability to eat and he started losing his ability to talk,” Joe Monaco, 37, of Beaverton, Oregon, told TODAY. “He just couldn’t move. He was just lying in one spot on the couch.”
“He was the sweetest kid. I always said that he never met a stranger, only a friend he hadn’t made yet,” said Nikki Monaco, who worked as a nurse until she became a full time caregiver to Emmett. “He, for example, would be in the nursery at church and would see a kid crying and even though he couldn’t crawl he would find a way to like roll, scooch over to them to give that kid the toy he was playing with.
“There was nothing wrong,” Nikki Monaco said. “I pushed back again. I said, ‘I understand what you’re saying that it’s normal, but where do we go from here? Because obviously there’s a reason we’re getting these tests done.’” “, You’ve got to check one more box. It’s kind of silly. The test won’t tell us anything. It’s just a formality,’” Joe Monaco recalled. “This test should have been done months earlier … It actually gave us the answer.”Toward the end of his life, Emmett could not see and would often wake screaming. Nothing calmed him except when mom Nikki Monaco held him.Krabbe disease is a rare genetic condition inherited when both parents carry the gene.
“The babies will smile and maybe start to lift their head up at 2 months of age but then they start to lose that and they never have normal development,” Kurtzberg said. “By the time they’re 5 or 6 months of age they’re spastic, which means they’re very stiff. They have seizures. They’re often blind. They’re extraordinarily irritable because the brain is irritated. So the mom, on top of all of this, can’t really comfort the baby.
“The estimates are it probably occurs in one in 100,000 births but it may even be rarer than that,” Kurtzberg said. “If a state has to spend money on health care for living children or screening for Krabbe, they’ll probably not choose to screen.”As Krabbe progressed, Emmett’s health worsened. Still the Monacos gave him a full life, including travel, riding horses and playing with his brothers.
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