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Rob Floyd opens up in an exclusive interview with PEOPLE about his daughter Indigo being diagnosed with stage 4 of a rare, incurable brain disease called Moyamoya at age 3
“It didn’t make any sense. It was the last thing we expected,” the Bar Rescue star and celebrity mixologist says
Rob adds that the experience has opened his heart in surprising new ways, as he and his family navigate their new normal
In 2017, life couldn’t have been better for celebrity mixologist Rob Floyd.
The former actor — who had switched careers in the mid-2000s to start creating cocktails at celebrity hot spots like Bar Marmont in Los Angeles — had just wrapped season 5 of the popular series Bar Rescue and signed a partnership deal with Princess Cruise Lines, where he curates their cocktails.
Life at home was thriving too. Rob, 57, and wife Megan, 43, a former interior designer, were raising their two daughters, Ella, then 6, and Indigo, then 3. (Rob also has two older sons from a previous marriage.)
That all changed one afternoon, when Indigo suddenly collapsed in the kiddie pool and couldn’t move the right side of her body.
“We thought maybe she’d been bit by a snake,” Megan recalls of the frightening day in an exclusive interview with PEOPLE.
Courtesy of Rob Floyd
Rob Floyd with young Indigo after her first brain surgery
A trip to the ER and a subsequent MRI revealed something far worse — the couple’s little girl had suffered a stroke. After further testing, doctors told her shocked parents that their daughter had been diagnosed with stage 4 of a rare, incurable brain disease called Moyamoya.
Affecting just one in 1 million people in the U.S., the disease causes a narrowing or blockage of the major carotid arteries, impacting blood supply to the brain and leading to increased risk of strokes, seizures and other brain problems.
“It didn’t make any sense,” Rob tells PEOPLE from the family’s home in Nashville, where their third daughter, Agnès, was born in 2020. “It was the last thing we expected.”
Indigo was immediately admitted to the pediatric intensive care unit at UCLA Medical Center, and following two weeks of serious complications because of ongoing TIAs (transient ischemic attacks, or ministrokes), she underwent the first of three long and difficult brain surgeries.
Her initial four-and-a-half-hour procedure went well, but a debilitating stroke the next day left her unable to speak or move.
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“She went from being this beautiful 3-year-old with no medical trauma to all of a sudden being a little potato,” says Megan. “But she was still cognitively present, which was really tough. Honestly, I just sat and cried through a lot of it.”
Indigo remained in the PICU for the next two months. “We’d get one, two hours’ sleep,” recalls Rob, “but you’d be scared to death in case you weren’t present [if something happened].”
Now, the family has settled into a new kind of normal, which includes staying vigilant in case Indigo has another seizure or stroke, and countless trips to the ER.
“We were there every single month for at least a week, for almost a year and a half,” recalls Megan. “But Indigo’s a fighter of the highest order. Giving up has never even entered her mind.”
Tony Floyd
Rob, Megan, Ella (eldest daughter), Indigo (middle child), Agnes (youngest daughter) Floyd at home in Franklin, Tenn.
The good news is, while there is still no cure, Indigo can live a full life with Moyamoya with the right medications and most likely further surgeries.
She will grow up, and she can get married and even have children someday. “It’s a progressive disease,” says Megan. “We just need to keep up with it.”
The child loves family movie night, her sisters and her beloved dog Hercules, a rescue trained to detect oncoming strokes and seizures.
Rob says there has since been an interesting upshot to all the grief and stress with parenting a child with an incurable brain disease: a newfound faith in humanity.
“It’s amazing what happens when you have to rely on the kindness of strangers,” he says, tearing up at the memory of all the friends who stuck by them throughout the worst of the ordeal, and the new friends they’ve met along the way, including Indigo’s doctor, Dr. Wang, who “treated her like she was his own daughter.”
“Our Muslim neighbors, who we previously didn’t know, would drop off dinner three times a week. Now they’re good friends. The nurses would take our clothes to their own homes and wash them for us when we were sleeping there. The kindness we were shown was just incredible. We now know what it’s like to be in the dark and have complete strangers come to our aid and save us,” he says.
In return, Rob and Megan have devoted themselves to giving back and volunteering when they can, including with Matthew McConaughey’s Just Keep Livin’ Foundation.
Rob tells PEOPLE, “This experience has given us more faith in humanity than we ever thought possible, which trumps any of the sadness.”
Read the original article on People
