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Maripat Monahan, Director of Resource Development

  
The Haas family discovered son, Briar, was born with von Willebrand disease when he was three years old. Briar is now an energetic nine year old who loves football and wrestling. In fact, Briar is a wrestling champion. At six years old he won first place in a national wrestling tournament, and is a three-time state qualifier in the sport. Briar’s sports participation was a deliberate decision he and his parents reached together. Not all children with bleeding disorders are given free rein to play sports. Doctors and parents have varying views about the wisdom of sports play for kids with bleeding disorders. This is among the many decisions that face families affected by bleeding disorders, and why it’s so important for families to feel part of a greater community.

Carmen Hass recalls that staff at the Hemophilia Outreach Center in Green Bay suggested that their family could benefit from becoming involved with Great Lakes Hemophilia Foundation. Carmen has since appreciated that Briar has been able to make friends with other children with bleeding disorders, something he desperately needs for normal social development.

“At GLHF events, he gets to hang out with kids who have bleeding disorders too, and he learns from them,” says Carmen. At school, the Hass family tries to spread awareness of Briar’s condition to the children in his classes, but older children still refuse to let him play football. According to Carmen, the older children tell Briar “You have a disease, you can’t play,” but she hopes that the children his age who have been educated about vWd will defend him. The need to fit in has led the Hass family to become more involved with Great Lakes Hemophilia Foundation events, where Carmen says most of Briar’s friends forget that he even has vWd.

GLHF provides its clients access to a wide range of events, such as the annual Wisconsin Bleeding Disorders Conference (formerly the Fun & Education Weekend), and summer camp. These events provide the Hass family and many other Wisconsin families affected by bleeding disorders a chance for children like Briar to be with other children who share their unique experience and to feel normal, one of Carmen’s primary concerns for her son. “I just hope that he can grow up and lead a happy and healthy life,” she says.

Briar, like so many other youth with a bleeding disorder, has had transformative experiences at summer camp. He first attended a special bleeding disorders summer camp in 2008 with a GLHF campership. This experience helped him turn a corner his mom had hoped he could. Prior to attending camp, Briar felt isolated and lamented being different from the other kids at school. Once at camp, Briar was in his element. Not only did he have access to sports activities, he celebrated his new experience, saying “I had fun meeting new friends. Now I know I’m not the only one with vWD.”

During Briar’s second year at summer camp, again through a GLHF campership, Briar gained confidence and an improved self image. After returning home, Carmen observed her son relating to those kids at school who gave him a hard time about his disorder. Briar no longer looked to his mother for support in these situations, but handled them with greater ease and confidence than ever before.

When Briar lost his medic alert bracelet last year and GLHF replaced it through our Patient Financial Assistance Program, Carmen thanked GLHF, saying, “the memories and self esteem that Briar gains through his involvement with GLHF are much more precious and difficult to replace.”

The Hass family genuinely appreciates the support they receive through participation in GLHF events, and embraces being engaged members of the bleeding disorders community. This year, the Hasses are leading the planning committee for a fundraiser walk event scheduled to take place in Neenah in the fall. Keep an eye out for more information about this event.

You can help Briar and his family, and many other families throughout Wisconsin who face the challenges that accompany a bleeding disorder. Here’s how:

• Visit our website to make a donation glhf.org

• Sign up at Pick ‘N Save or Copps to have GLHF benefit every time you shop. GLHF’s ID # is 293550.

• Use GoodSearch (powered by Yahoo) to surf the net – be sure you designate GLHF as your charity of choice.

Get involved! Attend a GLHF event, join a committee, hold a Party with a Purpose…give us a call to talk about any creative way you can think of to garner resources for GLHF so we can keep supporting families with bleeding disorders.
 

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