Beth Andersen and Patty Gavin attend the Hearts of Hope Gala. Photo by Andrea Ellen Reed.
On February 20, the Hemophilia Foundation of Minnesota/Dakotas held its Hearts of Hope Gala fundraiser at Radisson Blu Mall of America. Proceeds raised provide programs and services for those living with hemophilia—a rare inherited blood disorder in which the blood does not clot properly—and other genetic bleeding disorders
Skye Peltier (1): I work at the hemophilia treatment center as a physician’s assistant, but I also have a bleeding disorder. I grew up in an era where we were using blood products to actually treat bleeding episodes. I’d go into the ER and get a big bag of fresh frozen plasma to try to fix whatever bleed I had. That was in the era of HIV and hepatitis C. Then they developed drugs that were safe and were not made of human products. That has changed the landscape of hemophilia dramatically.
Bob Newman (2): I’m 87 years old. There are probably only a handful of people my age or older that have what I have, which is severe hemophilia. The only place we’ve been able to check is Minnesota and North and South Dakota, and I am the oldest there. I was over 25 years old before there was any treatment. A lot of guys died before they could do anything. Then there was a time when blood was tainted with the HIV virus. My younger brother got HIV, and he died of it about 11 years ago. I’ve had four joint replacements and recently broke my hip, and so I had that replaced. I’m a hard guy to keep down.
Tracy Rhyne (3): My son Nick has hemophilia, and a lot of people in my family also had it. My uncle passed away when he was 45 of the disease, and my mother had several uncles who died at a very young age because there was no treatment at that time. Hemophilia has always been a part of my life. We’re really fortunate now that Nick has really good medication and leads a pretty normal life. There are certain things Nick can’t do like play contact sports, go into jumpy houses, or go on a trampoline at a birthday party. He missed almost a month of school this winter because he had a bad bleed, so that was a tough one. For the most part, having grown up and seeing what it was like when there was no treatment, Nick’s life is as normal as can be. Nick Noble (4): It’s annoying seeing other kids do things I can’t do. I wish I could do some of that stuff and that I could participate.
Heidi Neubert (5): We have four children and our two oldest boys have hemophilia. The medication has become a lot easier to use and the drugs are more effective. Mike Neubert (6): The treatment has come a very long way, especially in the last 10-15 years. By staying on top of things, it’s completely manageable. The boys live a very normal life. They’re very active and are involved with lots of sports. Our sons with hemophilia can do everything that our other children can.
Susan Purdie (7): I work as a nurse in the hemophilia treatment center at Children’s of Minnesota. Hemophilia is fairly rare with one in 5,000 male births. It’s carried on the X chromosome, so it’s passed from women on to their sons, and then sons on to their daughters. There are about 17,000 individuals with hemophilia living in the United States.
Beth Andersen (8): My son has severe Hemophilia A. He’s 19 years old, and we’ve been part of the Hemophilia Foundation of Minnesota and the Dakotas since he was born. My son’s blood has less than zero percent of clotting capability. When he was born, hemophilia wasn’t in my family’s genetics. I was the first one. The women are the carriers, so I gave it to my son. The main thing I’ve had to adapt to as a parent is to allow my son to take risks. My son has never had a real bleed or joint injury, so he doesn’t know what it’s like to have hemophilia. They used to treat hemophiliacs on demand, which meant that you would get treatment after you got injured. Instead my son has always been treated a few times a week to prevent injuries. He will do that for the rest of his life.
John Schulte (9): In 1999 my wife and I had a son named Mason. He had a very rough delivery, and when he was circumcised, he didn’t heal right away. Mason started getting his medication to stop the bleeding as a baby, but 25 days into his life, he suddenly stopped breathing. At that point it was a diagnosis of SIDS. He would have been 18 years old this January. We had another son, Cole, a couple of years later. He also has severe hemophilia, but he got his medication right away. He’s healthy and plays soccer. He also works at Afton and skis. He’s not super affected other than every other day he has to find a vein and do his own medication.
Claudette Lyng (10): I have a son that has hemophilia. He’s 21, so we’re very active in the community and have been for over 20 years. I was real open with my son about doing things, and so he did what a lot of other kids did. The only thing he couldn’t do was play football, but he was very active in sports. If we did restrict him, he would go and do his thing, and then we’d find out after the fact. Now that he’s 21, he plays regular basketball with the guys at the Y on the weekends. We were always told to never let hemophilia run our lives, and we don’t.
Margaret Heisel Kurth (11): I’m a hematologist at Children’s of Minnesota—I’m sad to be retiring in May. I have enjoyed caring for kids with a chronic disorder because I got to work with the family and the child basically from birth until they transition as adults to adult care. I have kids here tonight who are in their mid-to-late 30s that I cared for back in the beginning. In the early 1980s, I saw the first children with HIV and AIDS come into the hospital when I was working in Los Angeles. These kids seemed to have a viral illness, and yet all of the usual viral studies were negative. Nobody knew what it was, and there was no test for it at that time. I came back to the Twin Cities, and I actually had incredibly few patients here with HIV. That’s because the person I worked with, Dr. Roger Edson at the University of Minnesota, had started a program in 1980 in which the parents of children with hemophilia could donate to their child. Minnesota was one of the few blessed centers in the nation where the incidence of HIV in children was markedly decreased. Dr. Edson was trying to delay children from getting hepatitis until they were older. Instead he ended up saving the children from HIV.