Forging a Lasting Friendship

When Adam was about 1 year old, he was having problems getting a bump out of the factor we were using. I was very frustrated because our treatment center had never told me that more than one brand was available! About that time, the treatment center mailed me information about an upcoming conference. I didn’t know what to expect, but I went anyway. I was hoping to question the supplier and find out why their factor wasn’t helping my son.

At the conference, I met Marianne and Joe, representatives from what is now CSL Behring, and they were great. For the first time, I found out other products were available! We switched Adam to a new product (Monoclate-P^®, the precursor to Helixate^®) and ended up using a lot less factor. Now we use Helixate^® FS, and we’re really happy with that. Adam is 17 now, but I still talk to Joe all the time. He keeps me informed about helpful new programs and products. But it was Marianne who introduced me to Kris Richardson.

Marianne intuitively recognized my frustration with the treatment center and the lack of information in general. We were living in a rural area, and I had no one from the hemophilia community I could connect with on a personal level. My sister’s son had been diagnosed, but she knew less than I did, and didn’t want to talk about it. Marianne called Kris and asked if she could talk to me. Kris was already involved in a lot of local activities related to hemophilia. She was developing Camp High Hopes and her boys were older than mine were.

The first time Kris and I talked, we were on the phone forever. I don’t know what it was, we just clicked automatically. From that time forward, we have talked regularly. She’s the first person I’d call when something was up. I’d ask her, “Is this something I need the treatment center for or is it something I can deal with myself?” Over the years, we would spend hours together on the phone. To have a resource like Kris only a phone call away was a wonderful thing. It’s nice to know that when you need to vent, you’ve got somebody who’s been there and done that. It was very comforting.

Kris was such a wealth of information. From her, I found out about the National Hemophilia Foundation, support groups, and more. I said, “All of this stuff is out there and I didn’t know it?”

Kris started having summer get-togethers for everybody, but I don’t remember exactly when we finally met. It seems like she has always been part of our family, like her friendship has always been there. I don’t know what I would do without it.

I wish there was a mentoring program where you could hook up with somebody whose kids are 5 or 10 years older than yours, someone who’s been there. There are a lot of chapters across the country that have wonderful programs, and those support systems and friendships are out there. But you have to reach out, because nobody’s going to come to you.

If you’re in a situation where you’re isolated, or don’t have a support network, you can’t be afraid to pick up that box of factor, get the name of your representative, and make that phone call. That could be the first step toward knowing everything you need to know.