For years, Nick Hinds and his wife, Amanda, had attended The Dragonfly Foundation functions and participated in fundraisers. Dragonfly helps young patients with cancer and bone marrow transplants and their families find strength, courage and joy.
The Hinds’ five-year-old son, Noah, was born with adrenoleukodystrophy. ALD is an inherited genetic disorder that can present as cerebral disease, adrenal insufficiency or both. MRIs are the only way to detect cerebral disease. Noah has been getting MRIs every six months since he was born; cerebral disease needs to be caught early to offer treatment, and the only treatment option is a bone marrow transplant.
In March 2022, an MRI indicated cerebral disease in Noah. Because his twin brother, Easton, was a match, Noah received a bone marrow transplant a month and a half later, making him a Dragonfly. That’s when the Hinds became associated with the foundation in another way — by receiving services from them.
“It’s definitely an eye-opening kind of thing with regards to never really knowing where your journey may head,” says Nick Hinds.
“Our ability to be involved with the foundation on both sides of the spectrum has really elevated our thoughts on the fundraising work we have done and will continue to do.”
Huge baseball fans, the Hinds’ first introduction to The Dragonfly Foundation was in 2012 when Marty Brennaman, former sportscaster and voice of the Cincinnati Reds, shaved his head at a Reds game as a promise to fans and in solidarity with his beloved Dragonflies. In 2016, Hinds got together with Brennaman to do an autograph signing to benefit The Dragonfly Foundation.
“I’m sure we will attend their events for years to come and try to reach out and do what we can to help them as much as they are trying to help us,” Hinds says.
Though they have not had the chance to be involved with most of the Dragonfly events since Noah is still immunocompromised, the Hinds appreciate being treated like family by everyone involved with The Dragonfly Foundation.
“They invite not just the child who is dealing with the medical situation to these events but also the other members of the family, too, because they recognize that everyone is impacted,” Hinds says.
“Involving our other children [Olivia, 10, and Easton, 5] has been a help and a reassurance.”
Today Noah is an active, happy, minion-loving five-year-old who is recovering well and looking forward to returning to school soon. During his 50 days in the hospital, the Hinds befriended a number of other patients and their families.
“Some of these kids’ stories are the most heartbreaking and heartwarming you’ll ever hear,” Hinds says. “I can’t imagine how difficult it must be for them to put a smile on their faces in these types of situations, and yet they do.”
The Dragonfly Foundation helps put the smile there. That’s what you do for family.
Do you want to support The Dragonfly Foundation’s mission? Visit dragonfly.org to donate.