Brother Caleb, Heather, parents Mindy and Ben, brothers Calvin and Quentin
SYMPTOMS & FA DIAGNOSIS
Heather Janssen, a recent high school graduate, and her family have been adjusting to her FA diagnosis for about a year. Heather started to walk a little funny when she was around 12 years old, just as puberty was hitting. Freshman year of high school, a neurologist incorrectly diagnosed her, but as the symptoms progressed, she and her family sought another opinion and received a confirmed diagnosis of FA with genetic testing.
With a large network of family and friends, the Janssens knew that it would take some thought on how to share the news and properly explain everything. A video of Heather, Ben, and Mindy explaining the diagnosis along with their new FA friends, the Gehr family, was the solution.
Always at risk of falling, Heather tried not to let that get in the way of being active in high school. She now uses a crutch for stability when she is out and about but at home, she tends to walk unassisted.
Heather and her family know she has atypical FA but they are not sure yet what that really means. This summer they will be meeting with an FA doctor in Iowa City, Dr. Matthews. Because they are from the Midwest, it made sense to see Dr. Matthews and make it a road trip to visit family along the way.
A THESPIAN AT HEART
Heather has greatly enjoyed participating in high school drama productions. She says, “Because there is so much room for interpretation, you make the character who you want them to be.” This year, she was cast to play Mrs. Peacock in her school’s production of “Clue.” Heather loved the creative process while rehearsing most of the semester with such a fun director and cast. After she was sick and in a wheelchair for a short time, there was concern about how she would do on stage. Because “Clue” is set in the 1950s, Heather was able to make her unsteadiness part of her character and use a vintage cane.
HIGH SCHOOL GRADUATION & BEYOND
Heather was determined to walk across the stage unassisted to receive her diploma. After having fallen ill during Spring Break, she became more and more unsteady on her feet. Being the independent young woman she is while having had to learn to start asking for help, Heather hatched a plan so she could walk at graduation. She consulted with her principal on what to expect and decided to use a crutch for stability while someone assisted her up and down the stairs. She knew that she was not alone on this FA journey but stuck to her guns and refused her dad’s offer to walk with her…although she now admits that she probably made this a bigger thing than it needed to be.
In the Fall, Heather will attend Oklahoma Baptist University, with a plan to major in Psychology on Pre-med track. Her dream is to be accepted to Baylor Med School with a goal of becoming a pediatrician.
How has diagnosis affected THE JANSSENS?
On one hand, as expected, FA impacts families financially. FA also impacts families with a whole slew of logistics considerations, such as which activities the family can enjoy together and how to coordinate vacations. In Heather’s case, she has two younger brothers, 10-year-old Quentin and 7-year-old Calvin, and older brother Caleb, 21 years old, who is in college. It is also very overwhelming to process how this diagnosis will affect Heather’s future and how to navigate the multitude of medical appointments and specialists, such as cardiologists and neurologists.
On the other hand, a positive outcome from dealing with FA has been the compassionate and caring community to which the Janssens have been introduced.
KEEPING A POSITIVE OUTLOOK
It’s not easy to keep a positive outlook. For example, it’s hard to be around people who don’t understand why she can’t join in on a lot of activities that include a lot of walking and are very physical.
Heather tends to focus more on what she has and not the things she doesn’t have. She is grateful for her friends who are very supportive, who make an effort to organize activities that can be at her pace. Heather states, “At times, I have felt worthless because I can’t do what others can do. But I maintain hope in God, remembering He created me, and that I have worth. This reminder has kept me going.”
MOVIE CRITIC AND CINEPHILE
A lover of movies, Heather enjoys critiquing the acting in movies. She is a fan of the Harry Potter franchise and especially appreciates actors Emma Watson, Maggie Smith and Alan Rickman. She also loves the many characters that Meryl Streep has played and has a special affinity for her as The Witch in “Into the Woods”, the character that Heather played in 9th grade. Some of the worst acting she has seen is in any Disney channel original movie. “Entertaining but awful!”
What are Heather’s passions?
Heather channeled her primary passion into a paper she wrote last year about how trauma affects children, even when experienced as an infant. When working at the YMCA Child Watch, she sees parents who don’t think about the words they use and how they impact their children. This explains why she wants to study child development and become a pediatrician.
Heather added that she is passionate about spending time with her friends. Her parents can attest to that; their only daughter is very social and loves to be on the go.
Favorite Quote
“Happiness can be found even in the darkest of times if one only remembers to turn on the light” ~ Professor Albus Dumbledore to Harry Potter