In 2018, my son Owen had a tooth removed and caused us to go on a very long and painful saga that ended up with a diagnosis of a rare and severe bleeding disorder called Hemophilia-B.

Sporadically throughout his childhood, he would injure his mouth, causing an immense amount of bleeding. But whenever his mother and I brought him to the ER, they would tell us it just looked like a lot of blood because of the saliva.

It felt weird to us but we trusted the medical professionals and assumed we didn't know what we were talking about.

However, in 2018, he had a routine cavity filling that helped us understand the true nature of his bleeds. 

The filling caused an infection, which resulted in some swelling. 

We had to have the tooth extracted. 

This caused even more swelling that got worse over the coming days. We brought him back to the oral surgeon who opened up his gums and cleared out the blood. 

When the surgeon stitched him back up, he noticed the area was taking longer to stop bleeding than expected. He asked repeatedly if Owen had a clotting issue and my answer was no each time. The surgeon wasn't convinced. 

Out of an abundance of caution I took him to his doctor that night to evaluate him. They couldn't do a blood test for hemophilia, but they did some basic tests.

To my horror, I was told I needed to rush Owen to the ER and have a blood transfusion because he had been bleeding too much. I tear up writing this. It was such a helpless feeling. 

Needless to say, the following days were filled with blood tests and a positive diagnosis for Hemophilia-B. 

Many years later I can say he's doing well. He's incredibly courageous and has gone through more than many of us have even in our adult lives. He has to receive infusions (in his vein) weekly and while he was terrified by the thought at first, he now gives himself the infusion expertly.

We have built a medical team with expertise, who cares deeply about Owen and his health and helps us get in touch with other resources. 

Thanks to the NYCHC, we've started building a community to help feel supported and connected to other families. The Chapter does so much to help bring patients and providers together, educating, creating unique experiences and furthering research.

I walk with NYCHC to build community, to make sure those with family members with hemophilia know about the resources available to them, to remind parents to trust their guts when they sense something is wrong and to remind providers not to overlook the basics, even if it's improbable.

Thank you so much for your donation. It goes to a great cause.