Navigating the Complexities of Hemophilia as a Family – In Loving Memory of James F. King, Sr.

“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 — attending school plays, sporting events, graduations and more. 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.”

Self-infusion opened the door to many opportunities. “Both Liam and Finn played many sports including soccer, baseball and basketball. Being able to care for themselves before games and practices made a huge difference,” said Megan. Self-infusing also made it possible for Liam to travel with his class to Europe when he was 15, and even go zip lining in South America!

“We never wanted to limit their activities. Our motto was that the more things they did, the more confident they would be out in the world. Learning how to self-infuse simply allowed them to be more independent.” Having that independence also meant that they were able to have normal social lives. “They were never left out of things because the people around them, including their friend’s parents, were confident that they could handle their bleeding disorder. So, they were able to go on trips with other people, attend parties, travel, go to their cottages – normal things that all kids want to do with their friends.”

Right after Liam was born, and subsequently diagnosed with Hemophilia B, James, a self-taught woodworker made Megan some flower boxes for the side of her home. “He came over, installed the boxes and said, “You will watch these flowers grow the way you will watch your children grow,” said Megan. “It gave me and my husband, Richard, so much comfort and confidence that we could get through this, and that it was something that as a family, we manage together.”

Megan’s father, James, graduated from Marquette University High School and Marquette University School of Journalism. He was a devoted Catholic, with faith balancing the central tenants of his life. James served his country, a proud Navy veteran in WWI. Among his many professional endeavors, he served as the Director of Public Relations at Froedtert and the Medical College for more than 18 years. Though considered successful by all accounts in his professional life, his most notable achievement by far, according to those closest to him, was his family. Megan did note his many acquired hobbies including woodworking; skating (he would work at the Petit Center on his lunch hours as a skate monitor); hockey; and his passion for sailing!

Upon his passing, memorial donations were sent to GLHF from the estate of James F. King, Sr., in honor of Finnian and Liam. James stated prior to his death, “You better make damn sure you make a donation to GLHF every year!” — showcasing both his straightforwardness and brutal honesty, along with his deep love, connection and empathy towards his grandchildren.

“I remember one extended hospital stay in particular,” said Megan. “I was at the hospital a lot, and every morning, my dad would be there with a smile on his face and a cup of coffee in his hand for me. You can’t put a price on those things. It just made us feel less alone. We were all in it together.”

Families living with a hemophilia diagnosis often recall some bad memories — the biggest bruise(s), the worst bleed(s) or a hospital visit. “I’ve found as I’ve become older that you learn to grow with their illness and manage it. This was certainly the case for our family. My father, and my family, never made me feel alone in my struggles or our journey. Someone was always there if I needed help, and you can’t put a price on that.”

James believed that his grandchildren were a gift from God, and subsequently as a man who wanted to “pay it forward” — believing that supporting other families going through some of the same things they have gone through, is not only critical, but simply put, “just the right thing to do.” Although Megan modestly downplays her involvement in the bleeding disorders community, she has spoken at GLHF programs several times as well as for the Coalition for Hemophilia B.

“Hemophilia can be a heavy burden that throws curveballs,” said Megan. “But having the encouragement and support of our family has helped us manage those challenges. Over the years, my father helped us learn how to grow with their illness and manage it — always encouraging and supporting them in everything they wanted to do.”

Memorials like James’s help GLHF to educate, support and advocate for the bleeding disorders community of Wisconsin.

Please remember GLHF in your memorial and/or estate planning. For information about how to donate, click here.

James is predeceased by his sisters Mary and Jane, and brothers Patrick and John and survived by his brother Tom (Joan) King. He is survived by his dear wife Estelle (Spence) whom he was married to for 72 years.

He was blessed by the love of his eight children: Cathy, Kevin (Pat), Joseph (the late Judy), Julie, James Jr. Patricia (David) Bowen, Bridget (Dan Abendroth) and Megan (Rich) Mc Cormick.

Adding joy and love to his life were his 22 grandchildren: Sen, Kevin, (the late Amy King), Michael, Carolyn, John, Farley, Shannon, Maura, Casey, Gabriel, Betsy, Charlie, Monica, Madeline, Maggie, Mollie, Grace, Liam, Connor, Finnian and Annie. In addition, Jim had nine great grandchildren whom he loved dearly.