As I drove out to visit my mother today on Mother’s Day, I thought of all the mothers in hemophilia who made history or made their mark. Some were famous, some not so much. Many made differences that impact all of us today. I realized, too, an important distinction: mothers were so prominent and made such a difference due to the HIV crises in the 1980s. And afterwards, when we lost almost half our community, mothers stepped forward to make changes. They had to; many of the men, especially the activists, were gone. And their children were too young to take action.
But let’s start with one famous woman from history: Queen Victoria. She is perhaps the most notorious carrier of hemophilia, as well as being the longest serving monarch in history, that is, until Queen Elizabeth just usurped that title! Queen Victoria had nine children; only Leopold had hemophilia B. But two of her daughters, Princess Alice and Princess Beatrice, inherited the gene, which they passed on to the Russian royal family and the Spanish royal family. Prince Leopold died on March 29, 1884 in Cannes, France. Princess Alice married Tsar Nicholas II and later gave birth to Alexis, who had hemophilia. And that changed world history.
In the US? I think of Jeanne White-Ginder, whose son Ryan White challenged not only the Indiana school system to allow him to stay in school despite having HIV, but challenged the nation’s mindset and fears. To a nation that feared homosexuals and heroin users as HIV contaminants, Ryan was just a little boy, who gave the dreaded virus a face and name. He died on April 8, 1990, and his mother continues his cause to educate everyone about HIV, health and advocacy. (I am honored beyond words to be friends with her on Facebook)
I also think of Louise Ray, mother of the three brothers: Ricky, Robert and Randy. The Ray family made headlines in August 1987 (a week before my own son with hemophilia was born) when their trailer home in Arcadia, Florida was fire-bombed a week after the boys were granted permission to attend school despite having HIV. The Ray family had sued the school district and won re-admittance to school, as well as a $1.1 million settlement. They were ostracized from the community and even their own church. The faced death threats. Louise was only 29 years old. Ricky Ray died in 1992 at age 15. Robert died in 2000 at age 22. Eventually, Congress would pass the Ricky Ray Act which provided compensation to everyone with hemophilia infected with HIV, as part of the government settlement for not safeguarding the nation’s blood supply.
And I bet you don’t remember that we once had a female president of NHF! Kate Muir, the one and only female president. That was a daring role to take on, and maybe it’s time we think about another woman to lead us?
There’s Michelle Rice, mother of two adults with hemophilia, former executive director of the Indiana Hemophilia Foundation and now senior vice president, External Affairs, National Hemophilia Foundation–and recognized insurance guru! And Dawn Rotellini, senior vice president, Program Development, mother of a child with hemophilia. Two powerhouse women who continue to influence chapters and leaders in the US and beyond.
Lastly, Kimberly Haugstad, executive director of Hemophilia Federation of America, a national nonprofit that advocates and educates and offers programs to directly impact individual families with chronic disorders. Kimberly works tirelessly to reach families in need through financial assistance, education and policy-making. She’s the mother of a child with hemophilia.
To these mothers, and so many more, Happy Mother’s Day and thank you!