I am optimistic about my son’s future because Didier has something I didn’t have when I was his age: PC Project.
Making the decision to have children was extremely difficult for my wife and me….
I have Pachyonychia Congenita (PC), a rare disease that causes thick nails, calluses, and blisters on my hands and feet. The pain can get so intense that I can’t walk or even stand sometimes.
But the worst part of having PC — for a parent — is knowing there’s a 50% chance your child will have PC. Is it fair to bring a child into the world knowing they might have to go through so much of their life in pain? My wife and I struggled with that question for a long time.
Now, seeing the smile on my son’s face, I know we made the right choice. His name is Didier, he’s almost 5, and he is a bundle of energy. He wants to run and climb everywhere. He’s started to develop calluses and blisters on his feet, but they don’t slow him down much…yet. The biggest problem right now is his frequent nail infections.
Watching Didier struggle and cry as we try to trim his nails and treat the infection is hard for me. But what’s harder is knowing the challenges he has yet to face.
As someone who grew up with PC, I can see into Didier’s future. I know there will be teasing from other kids. I know he will get frustrated from not being able to walk or stand for long periods of time. I know he will feel guilt for letting people down. And I know there will be lots and lots of pain.
I remember when I was 13 years old, one of my best friends enrolled me in a soccer tournament with his team. I was so excited to be included. But the pain after each game was excruciating. Sometimes I had to spend the whole weekend in bed recovering. I tried to hide it, but eventually people found out.
When people know you have PC — especially kids — they treat you differently. The teasing is bad, but what’s worse is the way they learn to exclude you. I don’t want my son to experience the same feelings of exclusion and isolation.
But I am optimistic about his future because Didier has something I didn’t have when I was his age: PC Project.
PC Project is the only organization in the world 100% focused on helping people with Pachyonychia Congenita. In fact, they’re working right now with scientists and pharmaceutical companies to advance new PC treatments and find a cure. PC Project gives me hope for my son’s future.
Thanks to PC Project, I’ve learned that living with PC is a life worth living. For example, I’m a loving husband and father. I have a career where I’m valued. My PC doesn’t define me — PC Project helped teach me that too, and we are teaching Didier the same lesson.
Yes, living with PC can be very hard. … having to educate my new employer about my PC … managing the limited number of steps I can take each day … not being physically able to play with my kids as much as I want … the list goes on.
But so much of what is worth doing in life is hard — like fighting for a pain-free future for people with PC. In the twenty years since it was founded, PC Project has:
- Provided grants to fund research for PC treatments
- Established a patient registry to categorize the different genetic mutations in PC
- Given over a thousand rare disease patients an accurate diagnosis
- Organized an international consortium of scientists to advance PC research
- Created a global community of physicians and patients to share information and support
- And so much more!
These milestones didn’t come easy. PC is too rare to attract attention from the media or Big Pharma. Without the generosity of dedicated people, PC Project wouldn’t be where it is today.
We want Didier to have an amazing life. Supporting PC Project is an investment in his future — and better futures for every person living with PC.
Thank you for caring about our son and for being on this journey with us. Together, we can find a cure for PC in our lifetime.
With love and gratitude,