Family of boy killed at Disney World urges organ donation

A Nebraska couple whose 2-year-old son died tragically at Walt Disney World nearly five years ago wants more families to consider donating their children’s organs if their child is ever facing death.

Matt and Melissa Graves created the Lane Thomas Foundation after their son was killed by an alligator in 2016. The Omaha couple said they decided to focus on pediatric organ donation because they wanted to help other families fighting for their children’s lives and they wanted to help kids because their son loved other children.

“Because we know the pain of losing a child, we wanted to focus on an issue where we believe we can help prevent other parents from knowing our pain. We chose pediatric organ donation because we saw those families struggling with very limited resources to care for their children,” Matt and Melissa Graves said in a statement.

Lane Thomas Graves was playing on a beach outside Disney’s Grand Floridian Resort and Spa in June 2016 when an alligator grabbed him and dragged him into the lake. He was gathering sand for a sandcastle when the alligator attacked. Matt Graves jumped into the water but was unable to rescue his son. Lane’s body was found 16 hours later.

At Disney World, a sculpture of a lighthouse similar to the one the foundation uses as its logo was later erected near where Lane was killed.

Matt and Melissa Graves say they want parents to talk about organ donation long before they ever face the unthinkable prospect of their child dying.

“No parent is prepared to lose a child ever. The loss is unbearable,” Matt Graves said. “Organ donation may seem like a hard choice to make. … But people who donate their child’s organs are heroes.”

The Graves family’s foundation is moving beyond the small-scale donations it has been making so far to families with children undergoing transplants in Omaha to raise awareness nationally about the need for pediatric organ donation. They cite statistics saying that roughly 100, of the nearly 2,000 children on the national transplant waiting list, die each year while waiting. Finding transplant organs for children is challenging because the pool of donors is so small.

“The real and ever-present issue the foundation is trying to address is … the donor organ availability which is markedly limited,” said University of Nebraska Medical Center Chancellor Dr. Jeffrey Gold, who serves on the foundation’s board.

Even though the foundation is small, Gold said he believes it can get more people to consider organ donation with its plan to tell the stories of parents who donated their child’s organs and the families that received them, and that can make a difference.

“Anything that can be done to reduce time on these waiting lists for both for adults and children will be lifesaving and produce a stress relief that is immeasurable,” Gold said.

The foundation, which has nearly $5 million in assets and two part-time employees, created a public service announcement focused on Lauressa Gillock of North Platte, Nebraska, meeting the now 7-year-old boy from McComb, Mississippi, who received her daughter’s heart. Gillock said organ donation helped ease the pain of losing her 3-year-old daughter to brain cancer in 2015 because she knew her daughter’s organs helped five people.

“I’m so grateful that I have this to help me in my grief process,” Gillock said. “It’s such an honor to have been part of that decision and to know that these families were pleading for a savior and my daughter was the savior. What better honor.”

Since the foundation was created, it has helped pay travel and living expenses for nearly 100 families being treated in Omaha. That included donating $112,275 to 30 families in 2019, according to the foundation’s tax forms.

Families of children getting transplants typically have to spend weeks or months in Omaha after an operation, and the long recovery time often forces one parent to take leave from their job or quit to be with the child. Gillock said those grants really help families.

“The Lane Thomas Foundation is amazing to help these families that are going through organ donation to not worry about financials. It should never be an issue when your child is on their deathbed. Never,” she said.