Had I been the Matthew my mother was expecting to give birth to, my life would have been astronomically different.
I was born right around the time the first factor concentrates to treat hemophilia were available for home use. Had I been born a male rather than a female, I probably would have been diagnosed with mild hemophilia at a much younger age. I suspect that factor would have been used for a “sprained” ankle or the bloody stubbed toes I experienced throughout my childhood. Given the time period, I would have almost certainly been exposed to factor that was contaminated with hepatitis or HIV. I have some guilt over that – was I spared merely because I was born a girl and the prevailing thought at the time was that females don’t have hemophilia? Why not me instead of the many wonderful people I’ve met in this community?
Since we have no family history and it appears that I am a spontaneous mutation, I didn’t grow up thinking much about the three H’s (hemophilia, hepatitis or HIV). My knowledge about each has come from within this community over the last ten years, and frankly, I have a lot more to learn. I thank my lucky stars everyday for safer treatments and I recognize and honor those fallen blood brothers and sisters who were co-infected. My son, and I, would not have access to safe products if not for the sacrifices over 10,000 families had to make.
Sometimes I see a disconnect between the younger generation with hemophilia and those who lived through the bleeding disorder community’s darkest days. How many of us moms of younger kids really know about that history and the challenges our fellow moms faced? Do we even ask about the days of fighting for Ricky Ray legislation? What have we learned from moms of the older generation, and more importantly, how are we supporting and loving those moms today?
May is Hepatitis Awareness Month. May is also the month we celebrate Mother’s Day. How about we combine those and honor all moms of children with a bleeding disorder – no matter if your child is 2, 22, or 42 years old.
Join us Tuesday, May 14 at 8 PM (Eastern) for a special webinar dedicated to moms. We will celebrate the last 40 years of motherhood in the bleeding disorders community. Moms of kids ranging in age from toddler to adulthood, will share their experiences and talk about the similarities and differences moms of different generations faced. It’s sure to be a powerful evening.
Sonji Wilkes was born and raised in North Carolina, where during high school, she developed an appreciation for volunteerism and community service. She graduated Magna Cum Laude with a BA in Behavioral Science from the Metropolitan State College of Denver in 2001. Sonji volunteers extensively in the bleeding disorders community and was selected as the 2006 National Hemophilia Foundation’s Volunteer of the Year. Sonji, her husband Nathan, and three children: Nora (11), Thomas (9), and Natalie (7), currently reside in Colorado.
Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of one individual’s experience. While extensive efforts are taken to ensure the accuracy, the writers, nor HFA assumes no responsibility for the reflections of the writers own personal experiences. The blog entries do not represent HFA, it’s Board of Directors and is not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.