In March St. Luke’s Hemophilia Center and Children’s Cancer Institute joined the National Hemophilia Foundation (NHF) in celebrating Bleeding Disorders Awareness Month. Bleeding disorders are relatively rare and not talked about a lot. Bleeding Disorders Awareness month is a great way to spread awareness about different bleeding disorders such as hemophilia, von willebrand disease, rare factor or platelet disorders, and more.  Local Malad Elementary School student Gannon Steed was diagnosed with Severe Hemophilia B in 2014, when he was just 2 weeks old. Hemophilia B is a bleeding disorder caused by a lack of blood clotting factor IX. Without enough factor IX, the blood cannot clot properly to control bleeding. Hemophilia B occurs in approximately 1 in 25,000 male births. 20% of all hemophilia cases are spontaneous, meaning someone has the disease even though there is no family history of abnormal bleeding. Gannon’s Hemophilia was spontaneous not genetic. 

Hemophilia is treated by boosting clotting factor levels or replacing missing clotting factors. People like Gannon who have severe hemophilia receive prophylactic factor infusions to prevent bleeding.  At the time of Gannon’s diagnosis, we were approached about participating in a research trial for a new medicine. Hemophilia patients have to be infused either in a central line port or in their vein multiple times a week. The study we were asked to participate in changed treatment from every other day for some patients or three times a week for others… to just once a week. As a family we ended up taking a leap of faith by choosing to participate in the study. As a result, Gannon became the first patient in the world under 5 years old to receive a new drug called Rebinyn. The Research program ended up being a huge blessing, and Gannon has had amazing success on this medicine. 

Just last week Gannon was talking to me about his hemophilia, telling me that kids at school didn’t believe that he had hemophilia or the ones that did, just didn’t understand what it was. I knew that we needed to help fix this. When I saw St. Lukes was doing activities to help spread awareness about bleeding disorders, I knew this could be a way to help my son. We decided to bring their “Paint the town Red” activity to Malad!

On March 5th with help from Malad Elementary School, Tiny Tots Daycare and Preschool, community members and social media we were able to “Paint Malad Red”, by having everyone wear red, hanging red ribbons and signs all around Malad. On social media people from Malad and other cities posted photos of themselves wearing red to show their support with the hashtag #GannonRocksRed. We had such a positive response doing this! So many children wore red to help support. I have had many people approach me saying they had no idea these disorders existed. I also had the opportunity to go into my son’s fifth grade class and teach the children about Hemophilia.

11 years have passed since Gannon’s diagnosis. Yes, it’s been a hard road, but he is worth it! I am grateful to Malad Elementary for taking such good care of Gannon, for watching out for him and helping us spread awareness. I’m also grateful to everyone else that helped make this day possible so that we could raise awareness about bleeding disorders in our area.  

Editors’ Note: The St. Luke’s article detailing Gannon’s case and providing more information about his care can be found on the St. Luke’s website at https://www.stlukesonline.org and searching for Gannon Steed.  The article makes it clear how much the medical staff has taken to Gannon, and how much the Steeds have benefitted from the research and care provided
by the facility.