Legacy of Lane Graves lives on through young transplant patients

OMAHA, Neb. — Children can get a fever, but rarely does it become a diagnosis that requires a heart transplant. When one of her 2-year-old twins spiked a fever that wouldn’t go away, Jalei Hobson took Jeremiah to the hospital in the middle of the night. Hours later they were sent home. But the next day, came a phone call from Omaha’s Children’s Hospital and Medical Center that would change the life of this Omaha family.

“They saw something on the x-ray and they said, ‘You need to bring him back,’” Jalei explained.

Jeremiah was dying. It was a hospital visit that didn’t end for 4 months.

“He ended up getting parvovirus and it attacked his heart function,” said the mother of four. Parvovirus in children is also known as Fifth disease. It usually includes a red rash on the face that clears up quickly, and it is typically treated with over the counter pain relievers.

Doctors put Jeremiah in a medically induced coma for 45 days until a suitable donor heart could be found.

“Some days I didn’t think he was going to make it,” said Jalei.

In the background of the Omaha mother’s struggle and stress, the Lane Thomas Foundation was working to ease the burden of the diagnosis and transplant.

“I think what people don’t realize is the recovery is months,” said Mandy Pflaster, Director of Family Support for the Lane Thomas Foundation.

Matt and Melissa Graves started the foundation to help pediatric transplant patients after the death of their 2-year-old son, Lane. The boy died at a Florida resort when an alligator pulled him into a lagoon. The hope of the Graves family is that no child will ever die while waiting for transplant.

Nationwide data shows 20 people die each day waiting for a transplant. There are more than 2,000 children under the age of 18 on the waiting list. More than 900 children received life-saving transplants in 2016, according to the Department of Health and Human Services

Lane Graves would have turned 5-years-old this month.

Florida’s Orange County Sheriff’s Office tweeted a picture of Lane Graves, the young boy that died in the Disney gator attack. The tweet included this message “Deepest condolences to the Graves family. Thoughts and prayers are with you during this difficult time.”

“We wanted to find a way so that no other family would have to know the loss of a child,” said Pflaster.

During Jeremiah’s hospital stay, the Lane Thomas Foundation provided the family with meals, rides, gas money, car repairs and even home cleaning services. They helped 19 similar families in 2017 and 27 families so far this year. Pflaster, a social worker who’s worked in a transplant unit, said pediatric patients do better when they have their entire family with them, so the foundation provides the means to make that happen.

“Sometimes we pay their mortgage. Many times, there are lost wages because of the amount of time they spend in the hospital,” said Pflaster.

While the Graves family has never spoken publicly about their grief and loss, their foundation quietly fills a space where families are in substantial crisis and they need support.

“The foundation is just a blessing, and I thank them. I think with them losing their own kid, they were able to reach out to help other families that need it,” said Jalei.

Jeremiah left the hospital in April and is happily talking, climbing stairs, toddling around the house and attending daycare, while his mother pursues her college degree. He’s reunited with his twin, Liam, and a new baby brother, Ashton.

This year the Lane Thomas Foundation is expanding their commitment to pediatric organ transplant patients. They’ll continue to offer financial and emotional support to families, but they’re also launching a nationwide campaign to encourage families to talk about organ donation before they’re in crisis.

“What we’re hoping is that people realize through a thoughtful conversation, should tragedy hit a family, I have the ability to save the life of another child,” said Pflaster.

Jalei said she thinks about the donor family every day. And though she’s written to the donor family, so far, they have not responded.

“There’s no amount of thank yous that would be able to express my gratitude,” said Jalei.

Watching the active 2-year-old play and climb, Pflaster talked about the literal miracle in front of her. She appealed to all parents, “Seeing the life that can be given to somebody through a tragedy, say ‘yes’. You can make a difference by saying, ‘yes.’”

Pflaster said the foundation is here for the long haul to help families in the organ transplant process, offering a beacon of hope and a light of love.

“We want to be here 50 years from now,” she said.