Allyx Zurio Formalejo and her husband, Jared, open up about life with hemophilia B and parenting their daughter, Citi. They share how independence, humor, and everyday moments — like helping with transfusions — shape their family’s perspective on disability, resilience, and joy. Read more in HemoWife.
Transcript
Allyx: Hi, I’m Allyx Zurio Formalejo. I know it’s a long name — and I write a column, HemoWife. On Hemophilia News Today. Obviously, I’m hemo wife. I’m the wife to a person with hemophilia.
Jared: It’s not obvious.
Allyx: Yeah, I — yeah, I know it’s not obvious because it’s not immediately visible. Invisible condition. Yeah, I get it.
Jared: And yeah, I’m her husband. I’m Jared, and I have hemophilia B, so I am the hemo husband.
Allyx: Yeah. We’re also parents to a spunky little girl named Melanie Citrine, or Citi for short.
Jared: She never really had any
Allyx: Misgivings
Jared: Misgivings or negative feelings — regarding disability. And she usually treats everyone quite fairly.
Allyx: It’s like disability is a very normal part of her life, considering that her dad lives with hemophilia.
Jared: And what matters to us most is exposing her to these things as if, you know, they’re normal, they’re ordinary parts of our lives. That’s why she actually has a pretty neat sense of humor when it comes to my disabilities. Whenever I would have blood transfusions, I would — you know — call her and ask her if she wants to watch.
And almost at all times, after the transfusion, I ask her to be the one to pull out the needle, and she does so very, very eagerly.
Allyx: Yeah. It’s her job. Every time.
Jared: So yeah, we integrate — you know — these things into our daily lives as if it’s, you know, something that’s just natural for her life.
Allyx: Sometimes when he’s injured due to a bleed, he can’t get up from bed, or his walking is restricted, or he has to go on crutches. But to her, that doesn’t really stop her from playing — and that doesn’t stop him from playing either.
Jared: Yeah, I am a pretty hardheaded guy. So even if — even when I wouldn’t have these things — I’d really still rather give my kid the unique experiences of still having a dad with hemophilia. And it’s just a personal opinion — I don’t really want to deprive her of that feeling as well, because it’s something that’s part of life. It’s sort of a blessing that I’m able to give her that unique perspective — or that unique experience — that everyone might not be able to give their kid.
I really encourage her to be more independent, so I allow her to be herself.
Allyx: Independence is one of our hugest tenets in the family.
Jared: Since I have a disability, I was kind of coddled as a child. I didn’t really have that much quote, unquote, independence, even though my parents wanted me to have it. But I don’t blame them, because they were only trying to be careful.
And yeah, it’s something I really valued growing up — having independence, or having to be able to do things on my own. So it really matters to me that my kid does have those experiences, so that she knows how to navigate life when she grows up.
If ever it’s a — it’s something that she can be a part of, I’ll let my kid be a part of it. So sometimes, even when I work out, for example, whenever she would see me do pushups, she would — you know — try to attempt that in her cute way, and it all works out. I have the opportunity to work out, and then she has the opportunity to, you know, try to attempt the pushup that makes her scream.
In parenting a kid, I guess, don’t overthink it way too much — because hemophilia, or any disability for that matter, can be integrated in your parenting. Never deny it, or never try to deprive your family — or your kid — of the opportunity to understand it. You know — give them that unique perspective, or give them that unique understanding.
You get to have that unique identity for your family, and your kids will have — you know — that special worldview that can only be hers. Yeah. There’s always a way to be able to insert these things. It’s just a matter of being open-minded to what’s there — seeing opportunities that might become — you know — chances for you to become a better parent, even if you’re incapacitated.
Allyx: Yeah.
