My fellow hemo moms are like my sisters. They are the women I can call, text, or email when I need an outlet for my fears and frustrations. There seems to be an instant sisterhood amongst hemo moms as soon as you connect a group of them – whether that connection takes place in person or online.
My friendship with Lynley is a great example. Lynley and I have boys who have had very similar experiences – a long standing high inhibitor, multiple ports, and we’ve both tried less-than-conventional means to beat the inhibitor. Our parenting styles are very similar in that we both roll with the punches and make the most of the situations we face. Lynley and I have never met in person, but she’s one of the moms I reach out to the most and talk to almost daily. I’m dying to meet her, but it’s going to take a trans-Atlantic trip for one of us since Lynley lives in New Zealand.
While raising a child with hemophilia can be a unique experience, it doesn’t have to be an isolating experience. And moreover, it can be a global experience. Mine and Lynley’s sons have had similar experiences on different continents – that’s kind of cool, in my opinion. As someone who grew up in a somewhat insular community, I love that I can connect with someone who has a shared experience thousands of miles away.
Unfortunately, hemophilia care around the world isn’t equal. In developing countries, too many kids with hemophilia go without factor replacement. The gap in diagnosis, treatment and management of bleeding disorders around the world is staggering. According to the World Federation of Hemophilia, “An estimated 75 per cent of people worldwide with bleeding disorders still receive very inadequate care or no treatment at all; their disorders remain undiagnosed. A child growing up with a bleeding disorder in a developing country suffers needlessly, experiencing the crippling effects of untreated bleeds. They often miss days of school or don’t attend school at all. Many children will die in early childhood.”
As a mom of a darling little boy who has had more than his fair share of trials and tribulations, I can’t help but feel blessed to have access to a safe and effective treatment. But I also have a profound sadness for all the other darling little boys across the globe who aren’t as lucky. As a hemo mom observing World Hemophilia Day and in solidarity with hemo moms from across the globe, I vow to learn about what hemophilia is like around the world and the ways that I can help. Hemo moms, will you join me? If we can get a group of determined hemo moms together, there’s just no telling the world of the good we can do.
To learn more about World Hemophilia Day and hemophilia in other parts of the world, visit the World Federation of Hemophilia (http://www.wfh.org). You can also learn more about LA Kelley Communications Project Share initiative here: http://www.kelleycom.com/projectshare/index.html
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 individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also 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.