Dan Gilbert's private struggle: Conquering neurofibromatosis

Five years ago, Quicken Loans founder Dan Gilbert made a decision: He was going to bring his business home to Detroit. The move promised jobs and would help shape and tone the rebuilding of Detroit.

But it is the fight out of the boardroom that most don't know about.

In 2010, when the company moved from the suburbs into the heart of the city, there were just 1,400 employees. Today, that number has increased by ten fold to 14,000, spread across 100 companies, and is taking up space in 78 buildings. It all came at a cost of $1.8 billion and was a commitment that has helped change the landscape of the city.

If you ask Gilbert, it was all worth it and it's only just the start of bigger things to come.

"Detroit has been good to me. And we've been good for Detroit," Gilbert told FOX 2's Huel Perkins in part 1 of an exclusive sit-down interview.

That's the Dan Gilbert you see. Away from the spotlight of his business empire, he's also been working for years on something that might change the world: a cure for his son. 

Nick Gilbert was introduced to the world at the 2012 NBA draft when he got to name the team's number one draft pick.

What we didn't know at the time was Nick was fighting a genetic nerve disorder called neurofibromatosis. The disease nearly killed him.

"Throughout the years he's had big challenges. He had brain surgery when he was 10 to save his life. He's been on and off chemotherapy for the last 12 to 15 years," Gilbert says. "What happens is that these tumors can grow anywhere on your body.

Commonly called NF, those tumors grow anywhere at any time and can cause deformities of the face and body but they can also grow inward. Those are the painful ones and even attack a child's brain. Nick survived but the damage was done.

"He only sees out of one corner of his eye. So he 7/8 blind if you will," Gilbert said. "Thank God we have great doctors who have treated him. And he's the happiest kid I know.

And it was at Nick's bedside 9 years ago, that Dan & Jennifer Gilbert decided they would try to give same chance of happiness and hope to the thousands of young people who cope with NF. Among them is Victor Chukuekwe, an NF survivor who's now working to save other patients.

"He was in the middle of Nigeria when some nuns took him in and figured out a way to bring him into the country for treatment. I think he came over 14 years old and became a medical doctor,"

That's why Gilbert's hosting a huge fundraiser for the Children's Tumor Foundation. It's a funny and fun way to help patients and their families conquer the physical, emotional, and financial strains of NF.

"There's a lot happening with gene therapy and adult stem cell therapy," Gilbert said. "There's always a percentage of kids of all people who are subjected to serious medical challenges at a young age. And you think what would happen if these hospitals went around and these people who dedicated their lives this stuff. So it's a pretty humbling experience, to go through it."

The fundraiser for the Children's Tumor Foundation is Saturday, Nov. 7th, at Cobo Center in Detroit. It's called “A Playdate To End NF.”

CLICK HERE for more details. 

TOMORROW: Come back for Part 2 of the interview Thursday.