Our daughter Coraline was born a healthy, full-term baby with zero complications. From the first moment I held her, I had all the dreams a parent has. I imagined her at dance recitals, playing tag with her big brother, and running in the surf at the beach. I felt such optimism for the life she’d live.
Within days everything changed.
It started when Coraline wouldn’t nurse. The doctors called it “failure to thrive” but couldn’t explain why. Her first symptoms of PC (which we didn’t know it was yet) had her medical team at a total loss. They put her on isolation precautions at the children’s hospital because no one understood the risks to her. It was overwhelming and horrifying. Almost overnight, she went from this perfect, healthy baby to this tiny, helpless infant. I was worried I might never even get to take her home.
A dermatologist suggested she might have Pachyonychia Congenita (PC). But PC is so rare, none of Coraline’s doctors could answer any of my questions about it. How do you help your child when even her team of specialists have never heard of her condition?
Late one night sitting in the hospital with my tiny baby girl, I found myself down an internet rabbit hole researching PC. The more I read about its symptoms — the debilitating pain, the calluses and thickened nails, the limited mobility, the blisters and itching — the more scared I became….
Would Coraline be able to walk? Would other kids tease her about her nails? Would this disease limit her choices in life? Most of all … could she be happy?
That’s when I found PC Project’s website.
It was like I’d been stumbling around in a dark room and someone flipped on the light. Right away, they were able to answer all of our questions. PC Project even paid for the genetic testing our insurance wouldn’t cover so we could get a sound and solid diagnosis for our daughter.
Best of all, they gave us a community too.
PC Project gave us peace of mind, the information we needed, and most of all, HOPE.
I can’t explain how much it means to connect to other families who have been through this. Yes, PC Project is about research into treatments and hopefully a cure. But it’s also about people helping people — amazing individuals all showing up for one another, sharing our fears, our wisdom, our stories. It’s a level of understanding you don’t get anywhere else. And help is always just a text, phone call, or group message away.
Coraline is eleven now, and she’s amazing. She’s kind, funny, and full of life. She loves school and has wonderful friends. But every day is still a challenge….
She takes daily pain medication, and she always has her pink wheelchair on standby. She’s had to learn how to explain her condition to curious peers and strangers. When she was younger, we roleplayed different questions she might encounter, but she still gets embarrassed sometimes.
As her mom, seeing Coraline in pain is the most difficult part. Like when I see her crawl around the house some nights because she can no longer stand. Or the grimace on her face at her brother’s t-ball game when I know she needs her wheelchair, but she doesn’t want me to go all the way back to the van and get it for her. Those are painful moments for me. But for her, I know those moments are all the time.
Yet, I’m once again optimistic about my daughter’s future. We all are — me, Coraline, her stepdad, and her brothers. PC Project and this community have shown us that, despite the struggles, Coraline can have a full and rewarding life.
We are so grateful that you’re a part of this PC community too. Thanks to the generous support from caring people like you, our family has help and hope. Your donations not only fund resources families like ours rely on but will also support research into new PC treatments and even a cure.
That’s why we give to PC Project and why we’re asking you to please join us by giving today. And to all of you who have already given this past month, THANK YOU!
My new vision for Coraline’s future is that she’s able to move forward at her own unique pace, that she strives for goals, and she doesn’t let a wheelchair or fear of being different stop her from pursuing her dreams. With a loving family and a supportive PC community, I believe she can and will be happy.
I’m so grateful to have had this chance to share a little about my daughter. Thank you so much for caring about Caroline and other PC patients like her.
With gratitude and love,
Hannah Whitehead, Coraline’s mother
P.S. PC Project is the only nonprofit in the world that’s 100% focused on helping people like Coraline with Pachyonychia Congenita. Thanks to caring people like you, our family has a diagnosis, knowledge, resources, and HOPE. When you give by the end of December 31st, your donation will be double-matched — making your contribution have 3x the positive impact! From our whole family, thank you for your generosity!
P.P.S. Please also consider joining the PC Love Builders family with your monthly gift at any level. To sign up, click here. Thank you!
