Knowledge is Power

Whenever I hear the phrase, “Knowledge is power, ” I think back to the animated children’s television show Schoolhouse Rock. I loved how fun, catchy songs taught kids how bills are passed, the preamble to the Constitution, and my favorite tune, Conjunction Junction. Every episode started with an intro stating, “Knowledge is power.” It is something that has stuck with me all these years. I never imagined how important knowledge would be in my life as I raise two sons with hemophilia.

The first thing I did when my oldest son was diagnosed with severe hemophilia A was to look for information. My husband and I devoured everything we could, but sometimes the resources we put our hands on were not very helpful. They were frightening.

One resource became a well-worn fixture in our home. It was written by Laureen A. Kelley, the mother of a child with hemophilia. Her book, “Raising a Child with Hemophilia: A Practical Guide for Parents,“ not only gave great, basic information about hemophilia, but also focused on issues ranging from the first diagnosis, to insurance issues, identifying a bleed, going to school, siblings, and self-esteem issues. It even had quotes from parents who were living with the disorder.

These people gave real-life examples of their struggles and victories as they did the best they could to empower their children and deal with their own grief. The book is in its fifth edition with even more stories and comments from people who are raising their children. I can never thank her enough for following through and making this incredible book a reality.

Over the years, it has been my privilege to get to know Laurie (Laureen) Kelley and call her my friend. She works tirelessly for people with bleeding disorders, not only in our country but also around the world. She is truly humanitarian. My friendship with her changed when we were at the Wildhorse Saloon in Nashville, Tennessee, at a National Hemophilia Foundation event. My husband and I had been trying to have another child, and when we talked to her that night about possibly adopting a son from China with hemophilia, I saw a woman whose heart was bigger than her petite frame. She was encouraging and listened to us with compassion like I had never experienced. We eventually had another child and did not adopt, but seeing her heart that night in the middle of a crowded, loud event, where she focused on me and my husband, if only for a brief time, made me admire her and count her as one of my favorite people.

I’d be remiss if I did not mention three additional books that serve as extremely important resources in the bleeding disorder community:

• “A Guide to Living with von Willebrand Disease,” by Renée Paper, RN, with Laureen A. Kelley (new edition coming in 2017). It is the first book on the world’s most common bleeding disorder.
• “Managing Your Child’s Inhibitor: A Practical Guide for Parents,” by Laureen A. Kelley with Paul Clement. This book serves as a resource for a segment of the bleeding disorder population that is often overlooked and misunderstood. The challenges that families with inhibitors endure are frightening, and having a written book with quality information and comments and stories from families who are living with inhibitors is essential.
• “Raising a Child with Hemophilia in Latin America,” by Laureen A. Kelley with Ana L. Narváez. This is the first book about hemophilia in Latin America that is based on interviews with dozens of families and patients in five countries.

Laurie realized there was a need for a book that was written by someone who understood what it is like to have a child with hemophilia. No clinician could have written “Raising a Child,” but a parent could, and she did. Her book has served as a starting point for thousands of families who were terrified of the life that their child would live. It gave much-needed information from the voice of a mother who understood.

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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.