YOUTH: Meet 10-Year-Old Advocate Fantine
BY ALICIA COOK
Fantine (pronounced fahn-teen) is turning 10 soon, and she is excited. To celebrate, her and her mother Delphine, grandparents, and 15-year-old brother Tristan are traveling from their home in Birmingham, Alabama to the beach.
Fantine adores her older brother Tristan. “We are very close. I love to play Minecraft with him, and tag and hide and seek,” she says. “At the beach, he always digs big holes and buries me!” She is also his built-in protector. “I tell him all the time to be cautious! I don’t want him to get hurt.”
Tristan and Fantine are the first two members of Delphine’s family to be born in the United States. While their father is American, Delphine is French, and the two children have dual citizenship.
“I’m half French!” Fantine says, proudly. “I’ve visited there! My favorite memory about France is visiting my great-grandmother, being in her very old house in her little village. I was four when I visited and I remember being amazed that the village had two playgrounds!”
At just 10, Fantine knows more about hemophilia B than the average adult. Delphine has made sure to answer her daughter’s questions about hemophilia and to keep her involved in the community and with The Coalition for Hemophilia B. Through her everyday exposure to hemophilia B, Fantine has become an advocate in her own right.
“Hemophilia B is a rare bleeding disorder. We need to careful that my brother gets enough medicine, but not too much. We are very cautious with what Tristan does with his friends,” explains Fantine, confidently.
And with that knowledge, comes worry. Fantine does not want anything bad to happen to her brother. “When my brother went to the hospital in January because of a port infection, I felt very scared that he was going to die,” she says. “I don’t want him to die because he’s my only brother. I was really spooked because I couldn’t go see him because of COVID-19 restrictions. I cried at school and my teacher and classmates made a ‘get well soon’ card for him.” “I am so happy he is okay now. I felt relieved. I would have cried rivers,” she adds.
For any siblings worrying about their brother or sister with hemophilia B, Fantine says, “It is okay to worry about them, but trust the doctors and nurses too!” While she is obviously wiser than her years, Fantine finds joy in what many young “tweens” enjoy. She loves playing video games, like Minecraft and Roblox. Her favorite subject in school is reading. She really likes to draw and is a talented gymnast and is currently working on back handspring and ariel. She has taken proper lessons for about a year and, within the first month, her gymnastics teacher moved her up a level, the one right before competition level.
Gymnastics is likely something the fourth grader wouldn’t be able to fully participate in at this level if she had hemophilia. Having one child with hemophilia B and one without does lead to some big differences. For one, Fantine had her first blood test recently at nine years old. Tristan was two days old when he had his first.
“When I grow up, I want to be gymnast in the Olympics and then a kindergarten teacher,” Fantine shares. “I would make sure anyone in my class who had hemophilia was taken care of.”
Fantine is promoting awareness, whether she truly realizes that yet or not. She says that as a teacher, if a student of hers had hemophilia and got hurt, she would know exactly how to apply gauze and pressure so that the bleeding didn’t go too long. She also knows just what to do with an ice pack if they get a bruise.
This awareness and attention to care is thanks to her mother including Fantine into the daily practices that come along with having someone with hemophilia B in your family. Fantine would help with the infusions, especially when she was younger. She would help prep the items, hand her mother the syringe. Her mother always made sure Fantine was included in the process and did not feel like an outsider.
Delphine also includes both of her children in hemophilia B community events. “I go to Camp Harvest,” Fantine says, excitedly. Held each October at Children’s Harbor on Lake Martin in Alexander City, Alabama, Camp Harvest provides a haven for learning, exploring, and bonding. It also provides Fantine with the opportunity to make friends with kids that have similar experiences as hers.
The family also attends the Symposium hosted by The Coalition for Hemophilia B in Orlando.
When she attends these events, Fantine asks everyone she meets, “Do you have hemophilia B or know someone who does?” Most of those she asks do not have it but have siblings who do. Fantine has a support circle of young people around her who know exactly how she feels. “When we were in Orlando, I fell in the bathtub and Tristan yelled, ‘ice pack!’” Fantine laughs, at the inside joke within the community.
“Sometimes I joke and ask if she needs factor when she gets hurts,” adds Delphine with a smile.
Including EVERYONE is one thing Delphine wants to stress to other parents. “Even if there is a non-affected sibling, try to make them part of the infusions, the meetings, the Coalition, the jokes, the vocabulary…it really helps and brings the whole family together.”
At the end of the conversation, Fantine shares some of the birthday gifts she is hoping to receive - Pop Its and other fidget toys, stress balls, and Prismacolor pencil set.