Desire to help people after hemophilia diagnosis outweighs online uneasiness

Whenever I’m on social media, I find myself questioning everything. Is that picture real or made by AI? Is this headline accurate? Are these videos genuine? I mostly stick to following family and friends, though I do enjoy dog videos. When it comes to messages from strangers, I’m pretty cautious.

One day, I got a message on Facebook from someone I didn’t know. He told me his newborn had hemophilia, and he and his wife felt overwhelmed and had a lot of questions. He said he’d seen one of my posts in a group for parents of kids with bleeding disorders and noticed how much I care about my sons. Without thinking much, I messaged him back right away and said I’d call him that evening.

A few hours later, I started to wonder if he was actually real. Why did I respond so quickly? I looked up his Facebook profile, but I was still not convinced. Then I remembered he mentioned his wife’s name, so I searched for her too. After seeing her profile, I felt confident they were real people.

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When I called, and there was no answer, I figured I had done my due diligence and would never hear from him. Did this man get another sucker to answer him before I responded? Then he called back immediately. He was a charming young man, and he said, “I was afraid you thought I wasn’t real.”

I told him he was right — I did wonder if he was real. The couple was still in the hospital with their baby in the neonatal intensive care unit. Their son’s circumcision had led to the hemophilia diagnosis, and they were scared. I shared my own story about raising two sons with hemophilia. But before anything else, I said something I felt was important.

Your baby is going to be OK. You will both be OK. If there was ever a time to have hemophilia, it is now.

I felt the relief over the phone. This precious couple needed reassurance in the middle of their fear. This new dad was brave enough to reach out to a stranger, hoping for guidance and comfort. He was determined to find someone else who had a child with hemophilia. He reached out right away, and that willingness to seek encouragement was a real sign of strength.

It’s a privilege to help others

In a world where I often question what’s real, this connection was genuine. The fear was real. The love was real. The hope was real.

This is why community and connection matter. This is why stories are significant. It’s why I keep sharing, even when I’m not sure if my voice is still needed. There’s always a new parent looking at their baby in a hospital nursery, overwhelmed by parenthood. Add in hemophilia, and the sense of being overwhelmed is almost too much to bear. Scrolling through posts at 2 a.m., searching for proof that their child will have a future, becomes a mission to gather information. Sometimes, that proof is simply a stranger who answers a message.

I remember the first mom I spoke to after my oldest son, Julian, was born. When she told me he would be OK, I broke down in tears. Her reassurance was exactly what I needed. It has been a privilege to be the first voice for many parents over the years. I don’t take the responsibility of being that voice lightly. While I didn’t have all the answers for this young couple, I had something they needed. I offered presence, experience, encouragement, and the words, “You are not alone. You’ve got this.”

In the uncertainty of the online world with AI images, questionable headlines, and filtered realities, the most genuine, truthful moments still shine through. A father reaching out. A mother crying with relief. A shared story that bridges fear and hope.

So yes, I stay cautious online. But I’ll never be too cautious to answer a scared parent. Hemophilia may be rare, but love, courage, and community are not.

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, and are intended to spark discussion about issues pertaining to hemophilia.