Dad’s Heartbreaking Post Says 5-YO Died of Preventable Disease | He Was Diagnosed ‘100 Doctor Appointments Later'

Parents want to protect their children from every harm and provide them with the best of everything. As soon as a child is born, parents go out of their way to make sure that their little one is comforted, safe and healthy.

But Nikki and Joe Monaco of Beaverton, Oregon were instead faced with tragedy. They were left devastated when they lost their five-year-old, Emmett, to a genetic disease. Their pain became doubly unbearable when they realized only after Emmett's passing that he could have been saved.

When Emmett was nearly two years old, he was diagnosed with a rare fatal condition known as Krabbe. The disease "has a potential treatment option" if detected at birth. "Parents can choose to treat their child if it’s diagnosed early enough, really before (they) become symptomatic," said Joe, 37.

But Emmett's diagnosis came too late and the treatment he underwent couldn't save him. It was because he was born in a state where screening for Krabbe in newborn babies is not mandatory.

Joe has been in grief and this year on father's day he wrote a heartwrenching message on LinkedIn which reads, "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 as my wife and I held him telling him how much we love him and how amazing he is,' he shared. "This will be my 9th Father’s Day as a Dad, but will be more special than ever as I remember the single greatest honor and privilege of my life — to be Emmett’s dad."

Heartbroken Nikki says that she felt like she has "failed my son because I had been pushing and pushing and researching and still it was too late."

Describing Emmett's condition, Joe told TODAY they had suspected something was not alright much before Emmett was diagnosed with Krabbe. They first realized it when he didn't hit his milestones as a one-year-old. Eight months, a dozen doctors and nearly 100 appointments later also his condition was not diagnosed.

But by then, Emmett had lost his mobility and would lay just in "one spot on the couch." “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 explained. 

Doctors then ran one more blood test which at first they had written off as "silly" that gave all the answers Joe and Nikki had been looking for. That test diagnosed Emmett with Krabbe. 

Babies born with Krabbe show no immediate symptoms and Emmett, though born two weeks early, developed normally initially. "He was the sweetest kid," recalls Nikki.

Slowly Emmett's health worsened as the disease progressed. But Emmett learned to communicate by blinking — once for yes, twice for no and three times for “I love you.” His resilient parents also decided to make memories with him and "give him as many experiences with his brothers as we could." They took him to Disneyland, camping, road trips to Montana, and enjoyed seeing "his personality come through."

About nine months before dying, Emmett lost his vision and woke up screaming in fear. The only thing that would comfort him was his mom holding him.

After losing Emmett to this disease Nikki said, "I can either be swallowed by my grief or I can take that energy and use it to help other families and future kids." Joe's post states, "My wife has taken it upon herself to create a bill at our state Capitol to add Krabbe (in the panel of tests) so no other Oregon child with Krabbe has to live and die with this wretched condition." So far, they have been unsuccessful, but they have no plans to stop.  

Only 10 states, including New York, Missouri, Ohio, Kentucky, Tennessee, Illinois, New Jersey, Indiana, Georgia, and Pennsylvania, screen for Krabbe, according to Krabbe Connect. Therefore, babies in other states, like Emmett, frequently do not receive a diagnosis in time for therapy.

References:

https://www.today.com/parents/parents/dads-post-sons-death-krabbe-goes-viral-lobby-newborn-screening-rcna37912

https://krabbeconnect.org/krabbe-disease/newborn-screening/

https://www.linkedin.com/feed/update/urn:li:activity:6943291164661825537/

Cover Image Source: LinkedIn | Joe Monaco