Making a Difference for People with Bleeding Disorders

With support from caring and generous people like you, our vision of people in the bleeding disorders community living their lives without limits is being realized every day. Every member is unique and special, but in many ways their journeys are alike. We’re proud to be making a difference for them through our mission of education, support and advocacy.

Helping Others Understand the Complexities of Navigating Hemophilia

“When I get to heaven, I will not forget about any of my grandchildren — and that includes Finnian (Patrick) and Liam,” said 96-year-old James F. King, Sr., before he passed away in May of this year. For his daughter, Megan (King) McCormick, this aligns with her father’s unrelenting support for his 22 grandchildren, including two of her six children, Liam (28) and Finnian (24), who were diagnosed with Hemophilia B at birth.

With no family history of hemophilia, Finnian and Liam’s diagnosis was completely unexpected —an estimated one third of those diagnosed with hemophilia have no previous family history of the disorder. Their hemophilia is the result of a deleterious mutation — a change in a gene’s DNA sequence that can increase a person’s risk of developing a disease or genetic disorder, such as hemophilia.

James was incredibly involved in all his grandchildren’s lives, developing unique relationships with each of them. Finnian and Liam’s Hemophilia B diagnosis also facilitated involvement in the bleeding disorders community and allowed Liam to attend Camp Bold Eagle in Michigan for three years, utilizing a scholarship provided from GLHF (prior to GLHF establishing Camp Klotty Pine in Wisconsin).

“GLHF’s campership program, which provided funding for Liam to attend Camp Bold Eagle three years in a row, was so helpful for our family,” said Megan. “He mastered self-infusing the first two years at camp but didn’t want to do it when he came home. After the third year, however, something clicked, and he became a lifetime self-sufficient infuser.”

Read more about James F. King, Sr. and his family.

Highlighting the Importance of Family or Friends When Living with a Bleeding Disorder

Paul Allen Natvig, who passed away last year at the young age of 70, was a humble man. Following his hemophilia diagnosis at birth, when doctors said he would not live past the age of 13, Paul was determined to see his personal achievements surpass medical predictions. Rather than being defined or limited by his illness, Paul lived beyond what was expected and built the life he and his family wanted and deserved, establishing a home in a neighborhood on Monona Bay in Madison, where he and his wife raised their two children.

Growing up, Paul was encouraged by his parents, David and Mildred, to spend his childhood like other boys his age, which for Paul meant playing sports and trying to outdo his younger brother, Dan. Paul enjoyed a special bond with his siblings – Kristine, Eileen and Daniel. In their words, “As Paul’s siblings, it was a privilege to be a part of his life. To the rest of the world, we all grow old. But not brothers and sisters. We know each other as we always have. We know each other’s hearts. We share a lifetime of family joys, sadness, but most of all love.”  

Read more about Paul Allen Natvig and his family.

Spreading the Word About Life with a Bleeding Disorder

Tracie and her family joined the GLHF community after her newborn son Zach was diagnosed with a bleeding disorder. She’s now an advocate who attends Washington Days with GLHF. “We quickly learned that it’s our responsibility to educate others, including our elected officials, so that they can understand just how costly this chronic illness is and how important it is to care for this segment of our population,” says Tracie. “Teaching others about living with a bleeding disorder is one of our primary goals and will continue to be for the rest of our lives.”

Read more about Tracie and Zach.

Being diagnosed with a bleeding disorder is life-changing, but with the support of GLHF and the members of our nurturing community, people can still live a life without limits. GLHF’s impact is as individualized as our community members themselves.