Personal Stories

MUMS would like to hear from you. Please share your personal story for us to post on the site. We’d love to hear about your trials and triumphs, your lessons learned, your secrets for success, or your family recipe for living life with a bleeding disorder.

Please email your thoughts to us by clicking on the “Contact Us” link at left.

THE BREWERS

My name is Janet Brewer and living with hemophilia as a sibling and a mother has been one aspect of my life for the last 35 years. My younger brother was born when I was ten, and I remember the feeling of shock and fear our family felt when presented with his diagnosis. When my husband and I began discussing family planning with the knowledge that I was a carrier, we contemplated adoption. Faced with the extensive time and expense that was involved, we discussed adopting a child with special needs. At that point my husband pointed out, "We can have our own child with special needs!"

Today we are the proud (and happy!) parents of Christopher, age 17, Stephen, age 14, and Mikayla, age 10. Both Christopher and Stephen live with severe Hemophilia A, and Mikayla is a carrier. Four years ago, at the age of 10, our son, Stephen, was diagnosed with an inhibitor, which is rather unusual given that inhibitors are typically detected at a much younger age. I would be lying if I didn't say that this experience shook our confidence in being able to "control the disease and not let it control us." Raising children is quite a ride, and adding a chronic illness only adds to the twists and turns-some being exhilarating-some being downright terrifying!

As a family, we try to emphasize the positives in life and focus on what we can do and not what we can't. Our life is full of activities centered around baseball, soccer, music lessons (drums, guitar, and soon, the flute!), band, horseback riding, swimming, camping, plays, and school. It's NEVER DULL at the Brewers!

I have been active in the National Hemophilia Foundation and New England Hemophilia Association. We have participated in activities at the Hole in the Wall Gang Camp, and I look forward to a time when I can volunteer more of my time there. Life with hemophilia has its unique challenges, but I truly believe that these challenges allow me to be a more understanding person. As my children grow older, I am amazed by their compassion, courage, strength, and resiliency; and I can't say for sure that living with a bleeding disorder hasn't had something to do with that.

THE ARGOS

My name is Christy Argo. I am the mother of Jake, a five year-old boy living with severe Hemophilia A (Factor VIII deficiency). Jake was not diagnosed at birth, and the diagnosis came as a shock to our family. As a new mother, I was overprotective, panicked, and concerned on a daily basis. Jake's determination and positive attitude has been an inspiration to our family in living with the challenges of hemophilia.

Today, I am a confident, strong, and proud mother. Jake lives a very active life, which includes school, being a green belt in karate, and he enjoys participating in swimming and golf. Our family is very active with our local Dallas hemophilia chapter through committee work and fund-raisers. We participate and advocate for health care benefits for people living with chronic disorders at Texas State Legislative Sessions. We are happy to be raising our son when he has so many choices in his health care to help him lead a quality lifestyle.

THE BROWNS

My name is Bert Brown. I am a single mother of two sons with severe hemophilia A (Factor VIII deficiency). Todd and Chad were born in the 1970's, a time of experimentation of new treatments and infusion methods. It was also a time of tragedy and negativity for those living with hemophilia.

I made a choice to raise my children with knowledge, self-confidence, and strength, often going against recommendations from established bleeding disorders organizations. Home treatment was not available when my children were very young, which forced us to spend many hours and days in hospitals, emergency rooms, and at home.

By age 29, my oldest son, Todd, had both knees replaced as a result of severe joint damage caused from bleeds. At the same time, I wisely resisted the advice from physicians to have the ankles of my younger son, Chad, fused together to avoid further joint bleeding. I would like to believe that my decision helped to enable Chad to fulfill his dream of becoming a Professional Wakeboarder.

My family's mission now is to take the lessons that we have learned, share them with others, and inspire them to look at all their choices when making personal decisions.