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Frank Deford is a sports writer that is best known for his Wednesday mornings on NPR and his presence on HBO’s Real Sports. However, he is not simply a sports writer. He has written 16 books: From The Old Ball Game to The World’s Tallest Midget: The Best of Frank Deford– and for the most part, he’s written a little bit of everything.
He’s been honored on several occasions for his writing, but one of the most touching things he has written is not only near to his heart, but it’s near to mine. I am a huge, long-time fan of Frank Deford. For the man he was, and the man he became after the birth of his daughter, Alex.
I have a good reason for feeling a bond with a man I have never met and have faith in the human being he is, who his daughter helped him become.
I’ll remember that night for the rest of my life.
I will remember it more clearly than anything else I’ve ever been through. I spent the entire two-hour drive home crying over the uncertainty of the future of my newborn child.
My beautiful, perfect, tiny, blonde haired and blue-eyed girl Kristiana had just been diagnosed with cystic fibrosis.
When you find out about something this terrible and haven’t even really been able to enjoy your child because she was sick since birth, it’s a hard thing to swallow. You have to dig deep. Accept it.
The doctors told us all of the specifics of what the disease would do to her. Cystic Fibrosis (CF) is a disease that invades the lungs first, by creating a thick sticky mucus that attacks the air sacs of the lungs and doesn’t allow the lungs to get rid of infections. At the time of my daughter’s birth, the life expectancy of children with CF was unfortunately just 18 years.
The thoughts swam in my head. “That was the kicker, 18 years? That’s all I’m going to get with my child? I cannot out live my daughter.” These thoughts were all I could think about.
The doctors also told us to be careful what we read on CF. Encyclopedias hadn’t been updated with the latest discoveries – and strides were being made in CF research. At this time, they had just discovered the gene that causes CF and were working on a cure through gene therapy. The doctors didn’t want us to read ‘bad’ statistics and give up.
For the most part, I didn’t read anything. The one thing that I did read, I couldn’t put down.
It was written by a very well-respected sports writer. The story was deeper than anything he had previously written. It was totally and completely from the heart. You see, his daughter was born with CF. Her name was Alex. And he wrote her life story– all eight years of it. A tiny life, you might think– but no, it wasn’t tiny. Alex lived in a very big way. The book is titled Alex: The Life of a Child.
Frank Deford painted a picture of Alex’s life that was so moving, the words resonate with me even now, years later. You see, Alex was one of those remarkable children that truly left a mark on people’s lives in a way that only her father could communicate.
The one thing that really stood out to me about Alex’s story, was how Deford and his wife let Alex just be a kid. She was an active kid that loved many things, and had several friends that were there for her to support her, but also, just to be her friend so she could feel normal. Her Dad provided her the protection she needed and the freedom to be Alex.
I can relate. Every time Kristiana hits a bump in the road medically, I want to put her into a bubble and protect her. It’s hard.
Deford chose to keep Alex alive through her story. He wrote this book about her life to support others– like myself, and he fought to improve fundraising for CF research. He became the Chairman of the CF Foundation shortly after Alex passed and he led them to wonderful success.
Today, he is still their honorable chairman.
Frank has written many things, but he has never written anything that has made as much of an impact on people’s lives. There have been updated editions of the book over the years because of its popularity and ability to touch people’s lives. Deford still recieves letters from people about Alex and her spirit that still lives on through this book and through his family.
This heart-shattering and gut-wrenching book touched my life. It tore me apart emotionally, and I’d be lying if I said I wasn’t a little torn up about it right now, even. You see, for the most part, my daughter Kristiana has lived a wonderful life. She has lived past 18 and she will be 20 in a couple of weeks.
Since reading Deford’s book, I have taken a different approach to our life. I realized that I need to let her live. I have done everything I can to allow her the life that she should have. My wife and I have done our best to protect her and advocate for her. We’ve been involved in fundraisers and events. We let her play basketball and run track. I coached, of course. She became a pretty good basketball player and was always active. Her ability to run up and down the basketball court and track has kept her healthy.
We have had a few scares, but she’s a fighter and we’ve gotten through them. Kids with CF have to have that fight, and willingness to live. They have to have parents that are special and can take the ups and downs of the disease and still remain positive. However, they also have to also be willing to accept the disease, as it’s not easy. Through his book, Deford was able to prepare me for this. And so many others, I’m sure.
Deford is a very positive man, but I’m sure that he’s suffered over the years. He lost his little girl to this disease. However, as I’ve illustrated, he didn’t give in and let the disease win, he has literally continued fighting it. He has made strides; life expectancy has risen dramatically since he’s been involved. It would have been easy to close up and walk away from his profession after losing Alex, but he didn’t. He fought. He used his God-given talents to continue to fight for his daughter, even after her passing, and he’s still fighting, to conquer this terrible disease that took his beautiful little girl all those years ago.
Thank you Frank Deford, for being the man you are, and the father to Alex you were, and for continuing on with the fight that has helped to improve the quality of life in so many children. Especially mine; Kristiana Nicole will be 20 soon and knows Alex’s story and your fight against CF.
I do have a good reason for feeling a bond with Frank Deford. Well, two reasons.
- For more information on Cystic Fibrosis, please visit The Cystic Fibrosis Foundation.
- Frank Deford’s books can be purchased on Amazon.com
- Frank Deford on NPR.
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