Meet Connor

He May Love Studying the Past, But He Definitely Has His Eyes on a Bright Future!

By Shelly Fisher

Connor was about ten days away from wrapping his junior year and looking forward to being a senior when we visited. He shared, “You don’t have to take any final exams when you’re a senior, and I’ve heard it’s the best year of your life.” As the treasurer of his school’s student council, chief editor of the yearbook club, and a member in the select choir, he was finishing strong with a few irons in the fire.

Active on his school’s student council, he attends all the meetings with the school’s board members and dean, and then he communicates changes to existing policy to the student body. He said, “They know I will tell them what I really think about something.”

As chief editor, Connor was excited to show me the final version of his yearbook, complete with a picture of his school and a traditional logo of their mascot. The yearbook committee’s votes decided the cover, and the legacy mascot had won out over a dragon.

It was no surprise when Connor confided that his rich baritone voice had earned him a spot in the bass section of the select choir. He was anticipating a competition at the end of the week, and although he had performed in many concerts, this was to be his first experience at a contest representing his school. With a lot of the choir members in their first year of participation, Connor felt it would be an invaluable learning experience for everyone. He was also looking forward to celebrating at an amusement park called The Great Escape afterwards.

When the conversion turned to academics, Connor told me he was a history and U.S. government fan. With a penchant for historical research, current events and global news, the soon to be senior hopes to have a future either in politics, or work as a CNN news anchor. When I noted that his voice was perfect for broadcasting, he said, “I get that a lot. Everyone wants me to go into television and radio.” He also shared, “In my school, I’m the political guy. Whenever something is going on in the news, I’m the first to tell everybody.”

In addition to enjoying some debate opportunities in his history class, Connor shared that he has really enjoyed all his classes this year and has even been on the high honor roll for all three quarters of the school year. He particularly enjoyed a math class as well where he felt the lessons were applicable to real life and allowed him to participate in a mock stock market. He shared that “he did pretty well” and would like to try his hand at the real stock market one day. Connor also enjoyed the reading list for English and noted The Great Gatsby as one of his favorites.

When asked how his friends might describe him, he said, “I’m not quite the popular kid, but I’m not the loner guy either. I talk to everyone about the news, sports, and music, and I think they would say that I am a good person.” After following up with a question about the type of music he discusses with friends, he listed Frank Sinatra, Dean Martin, the Beach Boys and classic rock as some of his favorite artists.

Connor has hemophilia B and an inhibitor, but that does not stop him. He enjoys gym class activities like flag football and pickleball and confided, “I try to do as much as I can, and I play like I’m in a sport.” He also enjoys watching sports and is a huge Green Bay Packers and New York Yankees fan. Connor is also a great sport because he congratulated me on my home team, the Texas Rangers’ World Series win last year.

Though he didn’t feel he should accept an offer from the Make-A-Wish program, his father encouraged him to do so, and he asked to go to a Yankees game. “We played the Toronto Blue Jays and won. Completely different from watching at home and seeing them play in a stadium. I definitely had goosebumps during the 7th inning stretch when they played a patriotic song.” When asked who his favorite player was, he said without hesitation, “Aaron Judge, it’s gotta be Aaron Judge.”

Connor’s diagnosis came early around 18 months when he was learning to walk and the bruises that were a result of falling refused to heal. He also learned that he had an inhibitor to factor IX. As a result, he now takes AlphaNine SD, and travels to his clinic an hour and a half weekly to get it. In addition, he goes for a monthly 4-hour infusion of intravenous hemoglobin (IVG).

When asked how he would encourage someone who had just been diagnosed, Connor had this to say: “Even going through all that I do for treatment, I still strength through. I want to be a story to tell and a role model for all the young-uns. I want to tell them not to let it stop them. You just gotta keep your head up. Your diagnosis might sidetrack you, but don’t let it overcome you. There’s been a lot of new medicine in the last few years. It’s going to get better. Don’t let it control you. Be who you are and are going to be - be the astronaut, be the firefighter, be the cop.”

Connor’s top priority as a politician would be leveraging a political role to “work with the FDA, CDC and WHO to get content to the community and promote progress to find a cure. Not many people even know what hemophilia is.”

After finding out about The Coalition for Hemophilia B from his doctor, he headed to the CHB Symposium in Dallas in April of 2024. He shared, “I met a lot of great people that made you feel like a human person and not a disorder. I’ve only met two other guys with severe hemophilia B and an inhibitor, and it was down at the show in Dallas.” He was proud to say that after finding out more about hemophilia B, his biology teacher asked him to lead a lesson on it for his class at school. “Not that many people know what it is.” Connor counted his time at the ranch riding horses, shooting bows, and swinging a lasso with his CHB group as a core memory that meant a lot to him, and he’s looking forward to next year in Orlando. “Rocky’s a great guy, and I really appreciated having some input into the next symposium.”

True to his love of history and music preferences, Connor offered the following when I asked if he had a quote, or song that he often thought of as a mantra for his life. “Ain’t That a Kick in the Head by Frank Sinatra. Of course this had to happen to me. And Franklin Delano Roosevelt said, ‘The only thing we have to fear is fear itself.’ Don’t be afraid of who you are, just be who you are and don’t let the disorder take control of you.”

Connor has an amazing support team, and he wanted to thank them all for the specific role they have played in supporting him since his diagnosis. “My grandma took care of my PICC line, and my dad has been with me for all the driving and everything. I want to thank Dr. Halligam. Dr. Porter retired and she was my hematologist since I was little. She always treated me like a person. I want to say thanks to my grandma for also stepping in when my father was at work.”

In closing, he added, “I just want to thank CHB for making me feel like a human being again and not as a disorder.”