From above: Axelle and her son, anonymous to preserve his privacy.
As the young French boy learns to ride his bike, laughing and shrieking with joy, it’s not immediately obvious he’s living with hemophilia. But he is. And he’s living well.
Axelle and Paul, the boy’s parents, were at first shocked when their son was diagnosed with hemophilia at 10 months old. They had no family history of the disease, a rare instance which accounts for only about 30% of all cases.
What is hemophilia?
Hemophilia, usually genetic, is a rare blood disorder that impairs the ability of a person’s blood to clot and may cause someone to bleed spontaneously or for a long period of time after an injury. Depending on the severity of the condition, injuries which appear to be superficial may be life-threatening. Internal bleeding can also occur in the joints and soft tissue. Repeated bleeding can often cause other health problems such as joint damage.
Due to the lack of family history with hemophilia, a regular day for the couple and their young son quickly turned into a nightmare. While crawling around on the floor, Paul and Axelle’s son fell and scratched his gum. He continued bleeding for the next three days. The family visited the hospital where the doctors, who had no reason to suspect hemophilia, told them to go home, saying that everything was normal.
But it wasn’t. And their son kept bleeding until he almost died. The family rushed back to the hospital for an emergency transfusion, and after hours of anxiety, the child was stabilized and diagnosed with hemophilia.
Unfamiliar with the condition, Axelle and Paul were initially devastated, believing their son’s life would be extremely limited. “Within 24 hours of the diagnosis, I was in the ER, and the wallpaper was full of crocodiles doing all sorts of sports: biking, rock climbing, skiing. My son was sleeping in my arms, and I was crying and thinking, he’s never going to be able to do that,” Paul recalled.
The couple’s journey to acceptance didn’t come easy. Slowly but surely, however, the couple educated themselves by speaking with their medical team and connecting with other patients and families.
Acceptance through connection and community
It was through this connection with people who knew about hemophilia, and learning about their stories and struggles, that helped Axelle and Paul move through intense feelings of anger, isolation, and guilt.
Paul explained: “The community was a great help because they understood one hundred percent of what we would say and feel, and people would offer tips, ideas, and advice. We initially thought it would make us sad, but it was very positive.”
Determination for their son to live a free life
Though the couple experienced moments of difficulty, they were determined to raise their son without fear. “The night he was diagnosed, I made a promise that I would not stand in the way of him achieving his dreams, even his wildest ones,” said Axelle.
As a dancer and yoga instructor, Axelle quickly recognized the importance of her son’s physical development in protecting his joint health and preventing falls. She and her husband began introducing their son to a variety of physical activities. “Every day, for two to three hours, we’re walking, running, climbing, swimming, golfing, doing yoga,” Axelle described. “And he loves it!” said Paul.
Changing the narrative
While Paul and Axelle feel strongly that their son should be active for the physical and emotional benefits it provides, they confess they still experience stressful situations. But they also understand that their attitudes and emotions towards hemophilia will influence their son’s.
“You can’t let your emotion and fears get in the way of your child’s development. You have to give your child a beautiful way of seeing life.” Paul advised. “We teach our son how to ride a bike properly, to do sports properly, so that he can build up his confidence and participate in them safely.”
Paul elaborated: “Historically, sports have been prohibited for people with hemophilia, but the combination of new treatments and a better understanding of the positive effects of physical activities are creating a completely new reality for young patients.”
Paul and Axelle’s hope for their son is changing the conversation around hemophilia. “We cannot let hemophilia define us. It is part of our lives, but we are way more than that,” said Paul.
The couple aims to help others in their situation and to raise awareness about how people with hemophilia can live full lives. They were inspired to share their own family story because they personally know the impact it can have.
“Every person with hemophilia is different,” Axelle stated.
“And it’s super powerful to hear stories about how people can live well with hemophilia,” Paul added. “It shows you the future is wide open.”