Mom Stories

Ever wonder how other moms manage the day-to-day responsibilities of raising a child with hemophilia? Well, now you can read the Mom Stories and find out!

The Mom Stories are written by women like you, mothers of children with hemophilia. These moms candidly share their experiences—their fears, their hopes, their triumphs—with an infusion of the humor and wisdom that comes from parenting a child with hemophilia.

Do you have your own story to share? If so, we’d love to hear it! Share your story


Owning Your Fear

“After the initial shock, there was denial and fear. Reading about hemophilia on the Internet only brought the fear of worst-case scenarios—that Lucas would have to virtually live in a bubble and never be able to do normal things. It was all I could do to try and not think of Lucas as always being fragile and vulnerable. Fear of the unknown took a foothold in my life.”

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Hemophilia Times Three

“Again, you never want anything to be “wrong” with your children—but to me, hemophilia wasn’t something wrong—it seemed normal. I wondered, “How will I parent a child who does not have hemophilia, when that’s all I know?”

Insurance How To’s For Your Grown-Up Child

“To help people with preexisting conditions, the federal Health Insurance Portability and Accountability Act (HIPAA) guarantees that health insurance can be changed without losing insurability for preexisting conditions.”

Family Rituals

“Video games, cable TV, and movie rentals can erode quality time, while a constant stream of activities—soccer, T-ball, karate, scouts, swimming—can contribute to an increasingly hectic pace. Many families have to schedule time just to be together. Incorporating rituals into your routines is a great way to do this.”

Managing Marital Dynamics

“While all of the members of the family system have important roles to play, it is the parents who are the central figures, particularly in the early years of a child with a bleeding disorder. However, keeping the family system running smoothly can put parents, and their marriage, under a tremendous strain.”

A Family That Takes Hemophilia in Stride

“We don’t have the perfect marriage. We argue like everybody else does. You don’t walk in and hear harp music. But when we have conflict, we figure it out. We’ll talk about it, and agree to disagree. You don’t have to always agree with each other.”

Homework for Junior High

“It can also be intimidating for moms when their children enter a new school. My son, Alex, will be starting junior high, and whereas in the past I’ve been very involved in his care, this will be the first time he’ll really be taking charge and managing his condition himself. But you, your child, and the school can be prepared if you do your homework.”

Choosing a College? — Overcome the Hurdles Early

“Fortunately, our insurance coverage is broader. But something I didn’t realize is that Kristin must be a full-time student to continue coverage under our plan—that means she has to take a certain number of course credits each semester.”

Summer Camp

“The entire hemophilia camp experience is very positive. The kids get a lot of moral support from each other. I am sure they also draw strength from the stories and experiences they share. They gain confidence from the adults who understand their condition and don’t keep them in a “glass bubble!”

Kristin’s Surprise Diagnosis

“I was probably more upset by her diagnosis than when I was told that my son Alex had hemophilia. I was angry when Alex was diagnosed, but at least I was prepared for that possibility. But, I wasn’t prepared when I found out about Kristin. So, it was a different kind of emotion. At first, I didn’t believe it.”

Staying Safe While Getting Active

“Every sport or exercise program carries some risk of injury. But if you and your child are fully prepared and know what to do in case of an injury, the benefits can outweigh the risks.”

A Hemophilia Super Center: The HTC

“While they wondered what effect the hemophilia would have on their family and on Alex’s future, the Burdens knew they’d be able to cope. Rhonda and her husband swaddled little Alex and took him home from the hospital, armed with diapers and the usual newborn paraphernalia…The next day, a nurse, a genetic specialist, and a social worker appeared at the Burden’s doorstep. They were from the local hemophilia treatment center.”

Perspective on HTCs

“The first thing I thought was, “I don’t need a social worker just because my child has hemophilia.” Well, you know what? We couldn’t live without Jan. She’s absolutely great. She’s been a valuable resource for us.”

Meet Laurie Kelley, Author of Raising a Child With Hemophilia

“The HTC gave the new parents helpful information about hemophilia, “but they couldn’t tell us about the day-to-day details of living with it,” Laurie said. She felt confident while at the HTC, where she had lots of support. But once Laurie was home, alone with her infant, she felt totally on her own.”

No Giving In

“Leland was obviously in pain and having a hard time with obstacles that many people can’t even imagine, but he resolved to be part of the team. That tells you a lot about what kind of kid Leland is. He’s a living example of never giving up, believing in something, and staying committed to it.”

Tips for Shaping Up

“A variety of activities can keep boredom away. It’s also important to find something that you really enjoy so you’re more likely to stick with it.”

Tip Sheet: Creating Your Own Rituals

“Every family goes through changes, including a new job or school; a death in the family; a move to a new location; divorce; or a remarriage. Rituals can be crucial during these transitional periods to give children a sense of permanence and predictability.”

Tips for Parents

“Don’t forget that you can be the happily married couple you were before your child was diagnosed, and can continue to do all of the things you used to do.”

Health Insurance Crash Course

“While the idea of switching health plans may seem overwhelming at first, fortunately there are many more options for alternative coverage today than in the past. And, by looking into alternative plans early, you allow the time to explore all your options and to choose the best possible plan for your situation.”

CSL Behring Assurance

“Insurance gaps can happen, whether from a loss of employment or your dependent status, a change in carrier, or exceeding your lifetime maximum coverage. It is critical to have a backup plan.”

Gaining Assurance

“It was so hard to accept the fact that something was wrong with our firstborn. And I felt like I wanted to put Vohn in bubble wrap so that he wouldn’t get hurt again. Luckily, resources were made available to us through Vohn’s specialist in Oakland, but acceptance was still very difficult. Stan and I were in denial for months.”

Open Communication

“Open communication between my family and the people involved in my son’s life has helped us deal with emergencies, and more importantly, has let my son only have to deal with his hemophilia when it’s bothering him.”

The Key to Better Dealing With Hemophilia: Education

“I was exaggeratedly and overly protective of Jonathan. His sister Kristina is three-and-a-half years older, and all she wanted was a little brother to play with. But I didn’t want her to hurt him. Of course, I didn’t think she would on purpose, but I didn’t want to let her touch or carry him out of fear of injury. When he was 6 or 7 months old, I got used to the reality that this was happening, and I started reading more and more about hemophilia.”

Giving Back, Not Being Held Back

“I’m so proud of Jonathan, and the whole family. We’ve learned and gained so much through our efforts, and it warms my heart that Jonathan has become such a strong and grounded person, not despite his hemophilia, but because of it.”

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