The Lanari siblings lean on one another and inspire others as ambassadors of Arkansas Children's Hospital
By Dwain Hebda, Photography by Brian Chilson
Few who meet Rachael and Michael Joe Lanari come away with the same view of children with special needs. The teenagers, who are children of Fran and Michael Lanari, have been inextricably linked since the day Michael Joe came home from the hospital.
"Rachael just has this kind of sixth sense on how to relate with Michael Joe, and she's had that since the time he came home," Fran said. "At just 2 years old, she turned on that little mother personality. If you look at our family pictures her arm is right around his little neck— it's that little hold that says she's gonna take care of him."
Born with Down Syndrome, Michael Joe experienced typical complications, including heart problems. However, the test administered at his birth hospital was misdiagnosed to read his cardiac functions were normal. After switching to Arkansas Children's Hospital, the error was discovered and the family learned the sobering truth.
"By 5 months old, they realized he was in serious heart failure," Fran said. "He had two holes in his heart."
The open-heart surgery that followed was the first of several procedures Michael Joe would have before the age of three. With each one, the bond between himself and his big sister only grew stronger, much like the bond between the Lanari family and Arkansas Children's Hospital.
"A lot of times, people ask me how do you handle it," Fran said. "I say I turn it over to God and I turn it over to Arkansas Children's Hospital and that is really the truth. Between God and ACH, I feel like I can manage."
Which is why a few years ago when Rachael suffered a grand mal seizure, Fran knew exactly where to direct the ambulance, even if she didn't have a clue what had brought on the episode.
"We did not know at that time that she had epilepsy," Fran said. "I think I held my breath all the way to the hospital, but having the experience that I had with Michael Joe and knowing the level of care that Children's Hospital gives, as soon as those emergency room doors opened, I could breathe. I was like, 'OK, she's here. She's got a chance now.'"
Today, Michael Joe is in maintenance mode, where every six months he visits his battery of doctors and specialists to monitor progress. Rachael's condition has triggered several more seizures, resulting in multiple concussions, so doctors are actively working to make her condition manageable, especially with her first year of college looming.
In the meantime, the Lanari kids have found numerous ways to promote the good work of the institution that has played such a central role in their lives. Both are Arkansas Children's Ambassadors whereby they help with various events on behalf of ACH.
Rachael, whose passion for persons with special needs and their families preceded her own diagnosis, has given talks to various groups. Michael Joe, who has also represented Easter Seals, is a well-known voice on the radio during fundraising events, such as the one annually sponsored by his parents' business. Over the past 12 years, Fran said, this effort has raised more than $350,000.
"There are really so many things that [the kids have] taught me," Fran said. "They handle conditions that they know are lifelong and they face it with courage and grace. They've taught me we really don't have much to be afraid of. God is going to always give us what we need, so just trust and look optimistically to the future."