Utah Hemophilia Foundation

Voices: The Future is Bright
by Stacey Mollinet

Hemophilia came into our lives when our third child, Erik, was diagnosed at age five months. He had been getting large, thick hematoma bruises around his rib cage from where the lip of the bouncy chair hit his ribs when he jumped up and down. I took him to see the doctor, even though it was in between well-baby visits. I asked the doctor that if this happened when he jumped up and down in the bouncy chair, what would happen if he hit his head? Would he get a hematoma in his head, too? The diagnosis of hemophilia A was actually a relief. We had been imagining it could be leukemia. When the pediatrician told us the diagnosis, he gave us a lot of reasons to hope. He said it was very treatable now with excellent and safe medicine. He said Erik would live a relatively normal life and that a cure was possible in the next ten years. We were relieved, but my husband’s mother was devastated. She had grown up with a severe hemophiliac in her neighborhood during the 1940s and 50s. She had seen firsthand how crippling joint bleeds were and knew that he had died younger than he should have.

Hemophilia was new to us. I had no family history of hemophilia and had only barely heard of it. We went to the HTC right away and met the Utah Hemophilia Foundation that day. Within a few months, we were involved in the First Step program and were meeting other parents of children with hemophilia. We were reassured that Erik would be okay. I read Laurie Kelley’s book, Raising a Child with Hemophilia. It gave me a lot of confidence that I, too, could raise a child with hemophilia. We were hungry to learn everything we could. We attended all of the educational events and were so happy when the National Hemophilia Foundation convention ended up in Salt Lake City when Erik was five years old. We attended two full days of education. The kids especially loved visiting the exhibit hall at the convention and coming home with bags of freebies. They thought it was alright to have a brother with hemophilia if it meant you got all this free stuff.

Erik was very lucky to bleed less than expected until he was about five years old. We were also lucky that he was a calm child, at least in comparison to his older brother Kyle. Erik was on the episodic arm of the Denver Joint Outcome Study, so he was only received factor when he had a bleed until he was six and exited the study. He probably averaged six to eight bleeds a year without prophylaxis and didn’t develop any target joints. He had a port placed when he was two-years old because of difficult venous access, and the port lasted until he was twelve, which is very unusual, probably because he didn’t use it much those first few years. Erik has had prophylaxis since he was six. It started out at twice a week, progressed to three times a week, and now to every other day as we decided with the help of the HTC that Erik needed more frequent doses to prevent bleeds.

Erik is thirteen-years old now. He swims on the Layton Surfers swim team and competes on Fairfield Jr. High’s Science Olympiad team, which always takes first in Utah and goes to the national competition. Erik likes to play video games and dabbles in writing his own games. Except for the hassle of infusions and the occasional need to take it easy after a bleed, Erik has lived a very normal life, very similar to the life he would have led without hemophilia.

This is the best time of all history to have hemophilia. We are grateful for all the medical advances that have led to safe, easy-to-infuse, at-home factor. Prophylaxis is now the normal treatment for a child with hemophilia, and that has prevented joint damage for Erik so far. We are especially grateful for continuous insurance that has paid the hefty bill each month. The cure has been a lot slower in coming than they predicted when he was born. But longer-half-life factor is on the horizon, which could mean only infusing once-a-week within a couple of years.

We are so grateful there is a Utah Hemophilia Foundation. It has provided a place for Erik to meet people with bleeding disorders and know that other people go through the things he does. It has provided a way for us to talk to other parents and compare notes. Going to camp helped Erik learn to self-infuse. I had the opportunity this year to spend the week as a counselor at camp. I highly recommend volunteering at camp to all of you. Get involved where you can. Help with the golf tournament. Participate in the BloodRun. Come to the Holiday Party, Family Fest or one of the retreats. We have missed a lot of those the last few years, but are happy to reconnect when we do come. Thank you to everyone who has helped make these programs successful. This is a great community of people, and we have an opportunity to help each other get through living with a bleeding disorder.