ONCE UPON A GENE - In Loving Memory of Lucas DeFabio
As many of you know, I’ve been blessed to get to know Daniel DeFabio over the past few months. Earlier this year, he spoke on the podcast about his amazing little boy, Lucas. It is with the heaviest of hearts that I share the news of the passing of sweet Lucas. I and so many others are deeply sorry and heartbroken for the loss of this amazing little boy.
Lucas was born with a rare and fatal disease called Menkes. After he was diagnosed the doctors said he would have 3-10 years to live. On Friday June 5th, Lucas was 11 years old.
Daniel called me a few days before Christmas last year while I was out shopping with Casey and the kids. I had never met Daniel before, he told me he was currently in the hospital with little Lucas and he had just listened to the episode about hospital survival. Within a few seconds of talking with Daniel the hustle and bustle of Christmas time quieted and I sat down in one of those loungy chairs in a store to listen about his son. If you’ve listened to the couple episodes Daniel has been a guest on you know how calming and melodic his demeanor is. He told me about Lucas’ diagnosis and about the recent and long hospital stay and that he was hopeful and determined to get him home by Christmas. I don’t know how to explain it but I felt instantly connected to this family after that phone conversation. There is something about them.
I went home and googled the film Daniel had made about Menkes Disease. I watched it three times in a row. I saw so much in Lucas and in the family's faces that was so familiar. Despite the looming knowledge of the outcome of Menkes, what I saw in their faces was love and joy. Their eyes sparkled when they talked about Lucas.
You can find the film and Daniel’s blog on The Rare Disease Film Festival website. They are beautiful, uplifting, and so worth your time.
Lucas touched so many lives and will continue to in so many ways. With his legacy and presence at the rare disease film festival, with the way his life created compassion and empathy in others, some with whom had never even met him in person, and with the love and the life lessons he has taught us that have molded and shaped so many in his family and outside of his family.
It is impossible for those of us who have never lost a child to understand what it must be like. I can only imagine that it must be the difference between seeing the moon in the sky and standing on its surface. Lucas always loved the stars and the spaceships that can take us to them and back. I don’t know how you go on after losing a child. I only know that you do.
Daniel, Tina and Alex, we are so sorry for your loss. I am so deeply sorry for your loss.
To Lucas, the boy with a smile that reached from ear to ear, thank you for your joy and for your hope. I am so grateful that you shared them with us.
If you would like to donate in memory of Lucas please visit The Menkes Foundation.
LINKS AND RESOURCES MENTIONED
TUNE INTO THE ONCE UPON A GENE PODCAST
CONNECT WITH EFFIE PARKS