New Hemophilia Therapy Could Be a Game Changer

With my oldest son, who is now 21, I never worried about limitations. He played soccer for a season, and that was the extent of his athletic pursuits. He just did not like sports and to this day, he does not understand the basics of a football game, and he has no desire to learn. He’s my creative, musical son who has a gift. And then there is Caeleb.

My mighty warrior, Caeleb, is 12 and if he were allowed to, he would play football. He has always wanted to be on a team. I know that children with hemophilia do play baseball, soccer, and basketball; but each person with hemophilia is different.

When Caeleb was 5, he wanted to play tee-ball. We signed him up, went to practices and it wasn’t until we saw him trying to run the bases at his first game that my husband and I realized the extent of the damage to his joints. It was painful to watch him try to run. He wasn’t in physical pain, but he could not keep up. We immediately took him to the HTC where the hematologist had an MRI done of his knee and ankle. She told us that he should not be playing baseball and soccer and that the damage to his joints was significant.

Explaining this to my sweet, 5-year-old boy in terms he could understand was not easy, especially since we lived in a town that didn’t have an indoor, year-round aquatic program. He was heartbroken, but at his young age, we were able to distract him and keep him busy with other things like Lego, cars, and playing with his dogs.

The game has changed now. He is now on Hemlibra (emicizumab-kxwh), and after a month of injections, he is doing very well. It is still early, and I wait with a little hesitation for a bleed to happen. If it does, we are ready, but I have a feeling this amazing medication is truly going to be a game-changer.

I still have a lot of reservations in my mind. For so many years, I have been working to direct Caeleb’s attention to swimming and golf, and now he is beginning to have much success with this new therapy. Does that mean other activities like soccer will open up for him?

I know it’s all about working with the HTC and making sure his joints are strong enough for certain activities, but when you have lived with a certain way of thinking for so long, it’s hard to even to consider how the quality of life for your son can continue to change.

I am so grateful that my warrior has been bleed-free for almost three years. I had truly thought that accessing his port daily was as much as I could hope for … now I know differently. It’s going to get even better.

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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to hemophilia.