How You’re Making a Difference: Zach’s Story

To the FA community,

This is usually the time of year when you hear from me about the triumphs and challenges at the Fanconi Anemia Research Fund (FARF). Not this year. You don’t need me to comment on the state of things. You already know. I could tell you about the struggles or hardships endured, but you undoubtedly have those stories of your own.

Instead, I want to share how you have made life a bit more hopeful and promising for people living with Fanconi anemia.

In particular, I want to tell you about a 14-year-old boy from Illinois named Zach. Back in May, Zach was diagnosed with tongue cancer. Unfortunately, oral cancers are far too common in the FA population, but at the young age of 14, his diagnosis came as an unwelcome surprise.

Thankfully, Zach was able to get surgery in June to have the tumor removed. Two months later, he was diagnosed with esophageal cancer. Instead of starting high school with his peers, he flew to New York to have surgery. Once the tumor was removed, Zach began a series of targeted therapies to remove any cancer cells left behind. That brings us to now.

Zach, 14

Zach’s mom recently shared: “FARF has been a big player in saving Zach’s life this year. Yes, it really is that simple. FARF has helped us find doctors and proper treatment plans every step of the way.”

After Zach’s diagnosis in 2011, his family reached out to FARF. They learned about a camp uniquely designed for FA families to connect with doctors and other families. At camp, they met the doctor who ended up performing Zach’s tongue cancer surgery. Through another service FARF provides, the Virtual Tumor Board, they can now connect their doctor with other FA and cancer specialists to provide Zach with the best possible care in the months and years to come.

When I hear Zach’s story, I’m reminded of the incredible community we’ve built. Services provided to FA families like Zach’s give patients access to the best doctors worldwide. Screening methods advanced by FARF grants provide individuals living with FA the tools for detecting cancer early. And treatment options that this community receives are increasingly successful thanks to years of investing in research. This is all possible because of YOU, and I do not say that lightly.

In all of the noise in 2020 – and there has been a lot – we’ve seen that what actually matters is pretty simple: People. Community. Family. We all already knew this, but there’s something about chaos and shared trauma that makes it clearer than ever. What’s clear to me is that your gifts are a light for families traveling through a very dark tunnel. Your gifts change lives. They’ve changed Zach’s life.

Thank you for giving. It matters. Fanconi anemia doesn’t stop. And neither do we. That’s our promise to every person and family touched by FA. Thanks for joining us in that promise.

All the best to you and yours,

Mark Quinlan

Zach (top center) with his older sister Sydney, who also lives with FA (top left), his brother Chad (right), his younger sisters, Summer and Samantha (bottom), and the family dogs.

FARF Executive Director

Categories: Stories

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