Hemophilia: A Positive Influence

Hemophilia has brought our family challenges, but it has also given us strength and many positive experiences. One of the greatest rewards has been seeing how Leland deals with his hemophilia and how this is helping to shape the adult he is becoming. Despite what he has been through—most notably the pain issues of the past two years—he still sees hemophilia as more positive than negative. He values his experiences from hemophilia and believes they have made him a strong, courageous, empathetic person who doesn’t take the good days for granted. If it were within my power would I erase all the pain and suffering he went through in that year and a half? Absolutely. Would I change the person he’s becoming because of those experiences? Never.

Last March, when Leland was slowly going off his pain medication and returning to school full time, we noticed this wonderful new sense of responsibility in him. Leland got himself up in the morning and got out the door every day until the school year ended. Suddenly, he was very self-motivated. He also showed a new sense of independence in doing his homework without a lot of reminders.

His attitude and perspective have evolved, also. One incident in particular reveals a lot about Leland’s character. I’m part of a regular e-mail group with other moms whose kids have hemophilia. One mom has a son who is 4 years old and has an inhibitor like Leland does. One day she posted a message expressing how completely frustrated she was. They had just gotten out of the hospital and had received bad news about his inhibitor. Usually, the mom has a great sense of humor and is pretty upbeat, but that day she was in a “why us?” mode. She worried that the inhibitor would affect her son in the long term.

I was replying to her post when Leland happened to come into my office. The mom knows and admires Leland, so I thought she might like to have his perspective as one who has actually had to live with hemophilia. I asked Leland if he had any words of wisdom that might help this mom and her boy feel a little bit better.

He said:

I was really astounded at that last sentence. When Leland was younger, I wasn’t surprised that he was able to find positives, but that was when managing his hemophilia was much easier. And in many ways, I think Leland related hemophilia with getting to go to camp, having ballgames, and hanging out with Corey Parker, who used to be a professional ballplayer and who now works for CSL Behring.

But after the last year and a half of what he had been through, I expected that he would have had a change of heart. This wasn’t a 6- or 7-year-old saying oh, hemophilia’s not so bad—this was a 13-year-old who had just gone through a really rough time, and who has the ability to process what all this means to his future. His comments were realistic and genuine, but also very upbeat and stoic for a 13-year-old. He is a deep kid.

We owe a lot to Corey Parker. He has been one of the biggest influences on Leland. Corey has never let hemophilia interfere with his goals and ambitions, so he has been a huge positive role model for Leland. Leland’s teacher once told the class to write a paper about someone who made a difference in their lives, and Leland wrote about Corey.

Because I’m active in the hemophilia community, I’ve met countless kids and young adults who have hemophilia and share that attitude with Leland. So many of them have this feeling that in a way, hemophilia is a gift and they wouldn’t wish it away because it’s helped make them the person they are. Leland has had a lot of these positive role models and I think this has been crucial to forming the perspective he has about his health and his future. As Leland’s mother, it means so much to me that he’s still able to be so positive after that really rough year and a half.