Following my interview with Vaughn Ripley, I was lucky enough to interview Johnny R. I’ve never actually met Johnny; however, I have talked to his mom a lot and given her insight into life as a hemophiliac. So, I will save you all the trouble of reading an introduction I couldn’t possibly write and let Johnny’s mom, Michelle, introduce him.
I would like to introduce my son Johnny. He is a 9-year-old mild hemophiliac. Johnny wasn’t diagnosed until he was over 5 years old and about to start school. I was concerned about some current bruises he had and wanted something in his medical records that he bruised easily, so we wouldn’t constantly be reported for abuse. Looking back at his first 5 years , we can laugh (only because we unknowingly survived) at some of the things that happened to him. He fell off a kitchen chair and hit his elbow. It instantly swelled and was hot and red…we had him x-rayed and tested for a bone infection. (We were at the doctor 3 times that week for various reasons.) He fell off the bleachers at a softball game and bit both sides of his tongue; he bled for more than 2 months. And he even got smacked in the head with a ceiling fan when his much bigger brother lifted him up on his shoulders.
When he was a toddler, I followed him around taking pictures. Not to remember all his childhood, but to show how crazy and adventurous he was and why he was always bruised up.
He is the fourth of five children. And my only officially diagnosed hemophiliac. His sisters will soon have their levels and carrier status checked. His older brother was tested before he started school. Johnny’s grandfather has hemophilia, so I have always known about it. But living it, especially with your own fearless child, is a whole different story.
Johnny is a thrill seeker and a risk taker. He has been an avid baseball player and fan since he was 3. His top favorite team is the San Francisco Giants. My guess is because that was the first team he watched win the World Series. He recently requested to go watch a game at Fenway Park. Maybe someday we can make that happen.
There are several things Johnny has been told he cannot do: such as football (note from The Cli3nt, you CAN play football!), hockey, or join the military. He has taken this as a challenge to find things he CAN do. Enter the world of racing. He has fallen in love with the world of NHRA and wants to race dragsters and funny cars when he is older. Imagine our surprise when we found a man who owns a JR dragster and is looking for a driver. Now Johnny is out looking for sponsors so he can make his dreams come true.
Johnny loves archery, (he is shopping for a recurve bow) fishing, building things with his hands (K’NEX, LEGOS, etc), helping out his mom, and even sometimes playing video games. He is pretty much always on the move and very determined to take life by the horns.
Who are you?
My name is Johnathon, but most people call me Johnny. I am a 9-year-old boy who has mild hemophilia. I am one of 5 kids.
Why do you like being a kid?
I don’t know why I like being a kid.
One word to describe you would be _______.
If you could be any animal, which one would you be and why?
*thinking* *thinking* *thinking*
I would want to be an elephant because they always look happy.
What do you like to do for fun?
I play baseball, build with LEGOS, and sometimes I run 5k races with my dad. I am looking forward to my next adventure of driving a JR front-engine dragster that runs on nitro.
What do you think you will be doing 10 years from now?
I am going to be building and racing dragsters.
What is your favorite thing to do in the summer?
Sleep in and eat when I want.
What would be the ideal allowance? Tell me how you would use it.
$100 would be a great allowance. I would spend it on video games and racing stuff.
What challenges, if any, do you face as a hemophiliac? What motivates you to overcome those challenges?
Not being able to do all the things my friends do, like some sports. I like to do things that others may not be able to do, like drag racing instead of playing those sports.
What advice can you give to our brothers and sisters who are living with a bleeding disorder?
Don’t be afraid to try new things.
What advice can you give to parents who have a child with a bleeding disorder?
Let your kids who have hemophilia, be kids, have fun, and try new things.
If you had a chance for a “do-over” in life, would you still have hemophilia? Why?
Yes, because I love camp and have made good friends there. Do you know I earned the top score, of all the campers who participated, in archery this past year? Plus, I learned to self-infuse.
Honestly, I thought for sure Johnny was going to have a hard time following Vaughn; but now, I feel like my next interviewee, Barry Haarde, will have a tough time measuring up to Johnny! Thank you little brother, and Michelle, for this honor. Factor Up and #NeverFoldUp little brother!