Levi Krystosek made his first commercial this week with an assist from UNLV basketball coach Marvin Menzies.
Sitting side-by-side with the coach in the Rebels’ practice facility, Levi struggled with his one good eye to read the Teleprompter, explaining how Miracle Flights saved his life by flying him to medical specialists 14 times.
“Miracle Flights has helped me, and they want to help you, too,” he said.
Unlike most 10-year-olds, Levi must be lifted into a chair because of a rare form of dwarfism.
When he was 1, he was diagnosed with Jansen’s Metaphyseal Chondrodysplasia. He also has kidney disease, hearing problems and is blind in one eye.
But his brain is just fine.
And he’s not at all shy.
Levi and Menzies teamed up Tuesday for a simple reason: to spread awareness that Miracle Flights wants to help children by providing them free flights to obtain medical care they can’t receive where they live.
They’re not making a pitch for money. They’re spreading the word that this help is available to kids all over the United States and sometimes overseas.
His mother, Dona Krystosek, estimated it would have cost her $1,000 for each of those flights.
“Without Miracle Flights, I would be in a wheelchair,” Levi said Monday while sitting in the office of Mark Brown, the Las Vegas-based nonprofit’s CEO.
When asked why he wanted to shoot a commercial, he looked incredulous and answered, “When you’re going to have a free flight to Vegas and shoot a commercial? Of course I want to do it.”
His body doesn’t process calcium well, so cartilage forms in his bones. It’s so rare, only 22 people in the world have been diagnosed with this form of dwarfism. Although he seems joyful, Levi is in constant pain, especially in his ankles, legs and back.
He’s 38 inches tall and weighs 64 pounds. An average 10-year-old would be about 18 inches taller. It’s uncertain how much taller he might get. He’s been his current height for about 2 years.
When he was 5 years old, his mother, a nurse, was researching on the Internet at 2 a.m. and came across Miracle Flights. She and her husband had maxed out their credit cards. Besides Levi, they have two older daughters, now 15 and 24.
Suddenly she had found some help for Levi. “It was the first time in months I’d cried happy tears,” Dona recalled. Her son would obtain the care he needed to be able to walk.
Levi, who lives in Ocean Springs, Miss., travels to see specialists in Delaware and Chicago, anywhere from two to four trips a year.
Last June, he was selected for the 100,000th flight for Miracle Flights, which Ann McGee started in 1985 in her Las Vegas home after her own child died without access to out-of-state specialized care.
Brown said it’s taken 30 years to provide 100,000 flights, and his goal is to provide another 100,000 flights within the next 10 years.
The hardest part of Brown’s job? People are unfamiliar with Miracle Flights, formerly named Miracle Flights for Kids. When he became the CEO in November 2015, replacing the retiring McGee, he realized that getting the word out was the biggest challenge. The former public relations consultant decided Levi, with his fun personality, quick wit and way with words, should be the first child in an ad to tell the public about the flights.
The ads, which are provided as free public service announcements through the Nevada Broadcasters Association, will air in Southern Nevada starting in January. Hopefully locals and tourists from all over the world will see them and realize this nonprofit could help them or someone they know.
I wrote about Miracle Flights when it was headed by McGee, and I criticized the lack of transparency and relatively high salary and retirement benefits she and her husband, William, obtained.
Brown is making changes and improving the operation. Levi is a part of that.
The website is more transparent, and the financials are there for anyone to check. The nonprofit is no longer making irresponsible loans or buying real estate.
Levi’s family shares his experiences on his Facebook page, “Little Levi.” His page has 5,830 likes.
I made it 5,831.
Jane Ann Morrison’s column runs Thursdays. Leave messages for her at 702-383-0275 or email firstname.lastname@example.org. Find her on Twitter: @janeannmorrison.