Episode 15

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Published on:

8th Aug 2021

The Disorder Dads (Part 2): Daniel DeFabio’s Surprisingly Grateful Response

This is part two of our 3-part series about a couple of rare disease Dads finding themselves doing things they never expected. The Disorder Film Festival and the Disorder Channel are two of the most powerful rare disease storytelling platforms on the planet. You might think that a few high-powered media moguls are behind it all.

Not quite.

Daniel DeFabio’s son Lucas was an injection of joy in their lives. No matter what the circumstances, Lucas would laugh and remind them not to sweat the small stuff. As Daniel says, “It feels like… [he is] clued into a better way of existing.”

Lucas had a copper transport disorder known as Menke’s Disease. Because of Menke’s disease, his hair was kinky and brittle, he was non-verbal, and his life expectancy was only 3-10 years old. He beat the odds and lived until he was 11 and a half. Sadly, he passed away in May of 2020 in the midst of the COVID pandemic.

Daniel focuses on the quality of the time he had with Lucas, not the length of his life. He even finds a silver lining in the quality time he was able to spend with Lucas because of COVID. His generous, gentle, and optimistic approach to having a son with a rare disorder is very inspiring and comforting.

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About the Podcast

Raising Rare
Imagine the excitement of becoming a new parent and then within hours finding out your child has a serious developmental disorder.

That is exactly where Sanath Kumar Ramesh found himself in the summer of 2018. One year later, on his son’s first birthday, they found out that their son, Raghav, had an extremely rare mutation of the GPX4 gene. At the time, doctors told them that Raghav may be the only one on the planet with this genetic variant who had lived beyond one month of life. The prognosis is completely unknown.

They were alone.

They were scared.

And then they went into action.

And now they want to share their story.

Every couple of weeks Raising Rare will give you an update on baby Raghav as he grows up. We will also share how Sanath and his wife Ramya are driving toward a treatment for their son. We will explore the science that Sanath is initiating, their efforts to fund that research, and the people they meet along the way. We will also hear how the family adjusts to challenges and changes that they are faced with. Most importantly, we will share the wisdom they gain along the way so that other Rare Parents can learn from their steps and missteps.

We don’t know where this story will go. We do know we want you to join us for the journey.
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About your hosts

Sanath Kumar Ramesh

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Kevin Freiert

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