tbo: Tampa Bay Online.
Thursday, Apr 19, 2018
  • Home

Henderson: There is hope out of hopelessness “Because of Ezra”

I don’t blame people for thinking Florida is the Stupid State. How could they think anything else, especially after what we have seen just this week?

We have Attorney General Pam Bondi postponing the execution of murderer Marshall Lee Gore because it conflicted with a fundraising party she had planned. We have that idiot “pastor” who wanted to burn copies of the Quran in Polk County.

Yeah, that’s how we want to present ourselves to the rest of the country.

v v

There is hope, though.

Put aside the aforementioned nonsense and read about a couple who should make us proud. This story won’t get headlines across the country, nor is it likely to provide material for “The Daily Show.” It’s just good people doing a good thing, all in the name of trying to help society’s most vulnerable children.

I met Kyle Matthews for the first time the other day. He is one of those sharp, tech-savvy thinkers and doers who one day will reshape the face of Tampa. When he began to share his story, one question kept repeating in my mind: Where did he and his wife, Robyn, find the strength to do such amazing work?

Any parent understands the fear that something awful will happen to his or her child, and it is worse when there is nothing that can be done about it. That happened to this family when Robyn and Kyle’s 2-year-old son, Ezra, was diagnosed with Stage 4 neuroblastoma on Oct. 4, 2009.

Two days later, Robyn learned she was pregnant. It turned out to be twins Charley and Price, but they were born 3˝ months prematurely. Charley is fine now, but Price lived just a few days. And though Ezra initially responded well to treatments, he relapsed and died a little more than 13 months after his diagnosis.

v v

That would crush a lot of people, but Team Matthews isn’t made like that. They have turned their tragedy into something that could help others afflicted with the disease that struck Ezra.

Operating out of their home, they formed Because of Ezra, a nonprofit organization that raises money for research. A particular focus is on preventing relapses of the disease, which happens to about 75 percent of patients.

They also operate a website — www.becauseofezra.org — dedicated to telling Ezra’s story.

“Most of the nonprofits have focused on diseases like leukemia and lymphoma, and they have helped immensely,” Kyle said. “But the day Ezra relapsed, doctors basically told us ‘pick a trial’ because there was no known way to treat relapses. Funding was a real issue, but we felt like we had to do something.

“We have a lot of relationships now with doctors doing research on this. We really want to do things that will affect patients within six months, not years.”

A recent Karaoke for the Kure fundraiser in Los Angeles raised about $120,000. A similar event in Tampa raised another $25,000. The money helps fund a drug aimed at preventing relapses, and the early results are encouraging. Of the 13 children taking part in the trial, none have relapsed.

It’s a start.

“And my wife says that this is a way to continue to be his mom. It’s amazing to be able to do all this in Ezra’s name, but it’s not just because of Ezra,” Kyle said. “There are a lot of kids who need help.”

Thanks to some people who care, they are getting it.

Weather Center