This Motorola executive lost his 6-yr-old to rare condition Krabbe. His LinkedIn post is an ode to fatherhood

Nine years ago, Joe Monaco - a Business Development Manager at Motorola - became a dad for the first time. In almost a decade, he was blessed with three beautiful children. But, things took a drastic turn six years ago when he found his toddler, Emmett, was suffering from a rare condition called Krabbe.

This inherited disorder, which affects 1 in 1,00,000 newborns in the US, impairs myelin (protective coating) of the nerve cells in the brain and the nervous system. It mostly develops in babies before they turn six months old, and they usually succumb to the disease by the age of two to nine.

In a detailed LinkedIn post, the grieving father said that the Monaco family lost their son five months ago. "Five months ago today, 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. It was 5 AM in Portland, Oregon, when he passed. The sun rose without him and my life forever changed."


Holding a funeral service for his young child was a heartbreaking experience. "Buying a 3-foot 6-inch coffin is at the bottom of every parent’s things-to-do list," he shared.

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Monaco shared a heartbreaking sight from the viewing part of the funeral service where his children keenly looked at their brother's baby coffin decorated with flowers.

At around the age of 2, the grieving father said that his toddler's nervous system began to deteriorate due to Krabbe which was diagnosed about 100 doctor appointments later. By the time he turned four, Emmett had lost the ability to walk, talk, eat, see, move, blink or even cough. The toddler needed 24x7 care.

During the period of his late son's ailment, the Motorola executive attended Zoom meetings by Emmett’s side in the hospital. He also thanked his team at Motorola for being supportive during such a time. "I’m beyond grateful to work for an amazing company where managers value family and a team that jumps to help when Emmett needed me most," he added.

This is Monaco's ninth Father’s Day as a dad, but he said it will more special to him than ever. "(On this day) I remember the single greatest honour and privilege of my life - to be Emmett’s dad," he wrote.

Monaco also shared a few lessons that his son's life and death taught him about being a father.

Tell your kids you love them: "Squeeze your kids extra tight and tell them you love them. Get on their level, look them in the eyes to make sure they heard you. Do this often."

Be patient with them: "When they make a mess, talk back, disobey - just remember how fortunate you are that your child is healthy enough to even do those things."

Guide your child: "Raise your child in the way they should go. If you are blessed with a gifted and talented little one, or they require more attention than you ever thought possible - meet them where they are at and help them be their best."

Meanwhile, Monaco's wife is fighting another battle. After meeting with one of his 17 doctors, the mourning parents learnt that Krabbe is a treatable condition only if it is diagnosed through standard newborn screening at birth when the baby is 24 hours old.

The US state of Oregon, where Emmett died, decided to drop Krabbe's diagnosis from the panel of tests nearly nine years ago. Mrs Monaco has been running from pillar to post to create a bill at the state Capitol to add Krabbe to the panel of tests so no other child in Oregon faces the same fate as Emmett.

"Ten states currently screen for Krabbe (as per Hunter's Hope Foundation). Shout out to New York, Missouri, Kentucky, Tennessee, Illinois, New Jersey, Ohio, Indiana, Pennsylvania, and Georgia! This is only one facet of Emmett's story - I would need to make a documentary to properly tell/show everything, any film-makers out there," he added

Monaco ended the post with a thoughtful post-script. "If you are still reading this and you know someone grieving, they may not mention their loss, but it’s on their mind every day. Say you have been thinking of them too," he concluded.