Running miles for ALD: Grafton father’s mission to fund research

GRAFTON, Mass. — The Marino family of Grafton knew something was wrong when their normally energetic son, Braden, felt like he could barely get out of bed.

“Every single morning when I woke up, I would be extremely weak. Like I wouldn’t even be able to walk from my bed to my door,” Braden Marino recalled.

It was back in 2018. As his parents watched his health decline, they took Braden to his doctor and eventually the emergency room.

“When we were there, things got a little more strange. His electrolytes, his blood pressure, his blood sugar were all out of out balance,” said mom Katie Marino.

After rounds of testing, results came back positive for adrenoleukodystrophy, or ALD. The rare, sometimes fatal, genetic disorder affects the brain and spinal cord and is more common with boys.

“I was nervous, obviously, because I didn’t want to think about everything that’s going to happen in the future,” Braden said.

“We just sat on the couch, before the kids woke up, and we were crying. Not knowing what our future looked like, what our future for Braden looked like. We really felt hopeless,” said Katie.

But what felt like rock bottom, quickly changed after a phone call from Dr. Florian Eichler at Mass General Hospital, letting the family know this diagnosis, was not a death sentence.

“I’m actually very confident that he’s going to lead a normal life because we caught him and we made the diagnosis before his brain or his nervous system was affected,” Dr. Eichler told Boston 25 News.

The family turned from education about the disease to action. Braden’s brother Ryan now uses social media to raise awareness. Katie began planning a fundraiser.

But Braden’s father, Chris, took on their boldest challenge: signing up for the 2020 Boston Marathon to raise money for Dr. Eichler’s research.

Soon after, the race was postponed due to COVID-19.

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“I came to Katie and said I think I have an idea of something I want to do, and she was like, you have to do it. You’re going to do it,” Chris said.

Chris decided to run every street in the entire town of Grafton, and post about their journey on Facebook. In late May, he began his new mission to run all 345 streets.

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On August 4, during Tropical Storm Isaias, Marino made one last turn onto the final street, with his two sons finishing with him, by his side.

The Marino family says running for research has become a teachable moment:

That life is the real marathon, and every runner has a reason to keep moving forward.

“Not everything is easy. But it’s pushing through. And seeing what Chris is doing, it’s really a good message for all of us,” said Katie.

A GoFundMe page has been set up, to visit it click here.

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