Fritz Schneider has worn many hats in his life. He has managed supermarkets, served as a deckhand on tugboats, owned a retail cleaning company, worked as a tour guide and even opened a neighborhood bar in his wife’s home country of Romania. Living with CMT is also on his list, but the most important role he has played is a dad.

When Fritz’s wife enlisted in the U.S. Army and their son Egon was born with CMT, he made the decision to become a stay-at-home dad — the best and most rewarding “job” he says he’s ever had.

Fatherhood and CMT: Fritz and his son Egon

Fritz and his son Egon

Fritz inherited CMT from his maternal great-grandfather who was a bicycle messenger during the Battle of the Frontiers in World War I. “He probably wouldn’t have managed a charge across ‘No Man’s Land’ without tripping over his feet,” Fritz jokes. “But he still proudly and courageously served by delivering important messages between the trenches.”

With his great-grandfather’s perseverance and strength inside him, Fritz shares 10 lessons as a dad with CMT about life and living it to the fullest. Fritz’s words of wisdom are powerful messages not just for his child with CMT, but for us all.

 

10 Reflections from a Dad with CMT

1. A diagnosis tells you what you have. It doesn’t tell you who you can be.

2. You’re never going to be the fastest or the strongest physically, but you can still run circles around others in both knowledge and intellect.

3. Life is hard. It’s hard for everyone. Knowing what obstacles are ahead for you puts you at an advantage.

4. Say “Yes, I can.” Even on the days when CMT tries to make you say, “No, I can’t.”

5. The person you’re meant to be with isn’t going to care that you have CMT.

6. You have neuropathy, which means a lack of feeling. You can literally walk across hot coals. You’re still going to burn your feet and end up in a hospital, but at least you’re not going to cry about it.

7. You’re going to be a terrible dancer. I have always introduced myself as a terrible dancer but have never been declined the offer of a dance. Women care less about your technique and more about your willingness to try. I recommend a lot of Leonard Cohen on your playlist.

8. Penguins have tiny little legs, no kneecaps and flippers for arms, but they still manage to be incredibly graceful and joyful in their medium. Find your medium. Don’t let a penguin one-up you.

9. Even though your nerves and muscles are dying, do not let weakness become bitterness, and do not let pain become an obstacle. When all of the odds are stacked against you, attack this life head on.

10. You are not a victim. You’re just well-informed.

 

Support Families with CMT Like the Schneiders

“I would like to see a treatment for CMT, and I have no doubt it’s coming soon. Donate to CMT research out of love for someone you know that is affected. Out of compassion. Out of generosity. But don’t do it out of pity. We’re strong. We have to be.”

Fritz Schneider

The CMT Research Foundation invests in the most promising CMT research focused exclusively on drug development. By pursuing creative and unconventional strategies to advance scientific discovery and partnering with researchers, medical experts, industry leaders and patients, we’re speeding urgently needed answers to families — not someday, today. Help deliver treatments and cures to dads with CMT like Fritz and kids with CMT like Egon: Donate now.

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