Jacob Veronda, 8-year-old with rare genetic condition Kabuki syndrome, goes home after 100 days at Lurie Children's Hospital ICU

CHICAGO (WLS) — Jacob Veronda’s parents feared this day would never come.

Jacob’s family got to take their 8-year-old son home on Tuesday after he spent 100 days, mostly on a ventilator, in the hospital.

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“We were told a couple times that Jacob would not make it. So, many tears with his older sisters, many struggles, sleepless nights, phones ringing off the hook during the night,” said Holly Veronda, Jacob’s mother.

But now, Jacob’s 100-day stay in the ICU at Lurie Children’s Hospital is over.

“It’s great. It’s been a long time coming, I mean, heading up here every day,” said David Veronda, Jacob’s father.

Jacob, who everyone affectionally calls Jake, was born with Kabuki syndrome, a rare genetic disorder that affects one in 32,000 babies at birth.

He was airlifted to Lurie Children’s on Oct. 14 after a routine checkup for an ear infection turned out to be a combination of bacterial, fungal, and MRSA pneumonia.

“He had to be intubated for two months, and in December, he finally got his trach. So, after 100 days, here we go. We’re ready to go,” Holly said.

For more than three months, Jacob’s parents would make the two-hour round-trip drive every day from their home in Coal City, some 60 miles southwest of Chicago, to the downtown hospital. On the weekends, Jacob’s older sisters would come, too.

“It was hard seeing him. He was sedated. He couldn’t talk. He can’t talk a lot, but seeing him out like that,” David said.

The potentially life-threatening diagnosis came as David, who is a union electrician, recovered from knee surgery and had not been able to work since September. Holly is a homemaker and Jacob’s primary care giver.

The family credits prayer for Jacob’s miraculous recovery along with the caring medical team of talented doctors and nurses who admitted, at times, that they were unsure if the child would survive.

For the boy’s primary care nurse, Julia Webster, Tuesday was bittersweet.

“I’m going to miss you guys a lot. I’m going to miss him a lot,” Webster said.

The Verondas say Jacob can now get back to being the happy kid he is who loves music, Sonic the Hedgehog, Disney stuff and playing with his sisters. They know they are lucky to have their son back.

The family took one final picture before leaving the hospital while offering some encouragement to others experiencing a similar journey.

“It’s always going to be one step forward, two steps back, but it does get better,” David said.

“You will get your homecoming day, and Jacob is proof,” Holly said.

Jacob still faces some health issues and will have to return to the hospital for checkups. In the meantime, the family plans on holding a fundraiser in their hometown to raise money to offset the significant medical bills that insurance most likely will not cover.

Jacob Veronda, 8-year-old with rare genetic condition Kabuki syndrome, goes home after 100 days at Lurie Children’s Hospital ICU

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