Name: Isabella (Bella) Zenteno
Age: 13 years old
Where do you call home? Fort Worth, TX
Education: 8th grade
Who do you live with? I live with my mom, stepdad, sister, and three brothers.
What's a typical day for you? I go to school and do lots of homework. I just got a puppy that we are training to be my service dog, so that's now become a daily job.
How long have you known you are living with FA? I was diagnosed in November 2018.
Are there any others with FA in your family? No one else in my family has FA.
What do you like to do to stay active and what type of exercises work for you to stay strong? I go to physical and occupational therapy once a week. I also like to swim, ride horses, and ride my recumbent bike.
Do you have any hobbies or special interests? I love art, swimming and reading.
When FA gets you down, what do you think/do to feel better? When FA gets me down, I like to draw or paint.
Tell us a little more about you. I love the ocean. I want to study and one day become a marine biologist.
Interview with Isabella's mother
Name: Cassandra Smith
Relation to FA patient: Mom
What quality or trait has been brought out the most despite living with FA? Understanding. I did not have much understanding of the rare disease or special needs communities. I don't think you can fully understand what someone is going through until you're in the situation. I have so much respect and admiration for these patients and families. They carry so much weight on their shoulders but most of the time you would never know.
What did you find was the best way to discuss the diagnosis with Bella? I don't think I did find the best way. I was still in shock when I told her. I believe now that a parent should probably allow themselves time to process and learn before having that conversation.
What advice would you give to other parents whose child is newly diagnosed? Do not worry. It's a waste of energy. Life will be different, and that's ok. It still goes on, so live it to the fullest.
How has Bella inspired your life? I am inspired because every time I think I can't do something or I'm too tired I think of her. If she can do anything she wants/has to do with such a physically challenging disease, then I have no excuses.
How have you been encouraged for her future living life with FA? I am encouraged by the amazing FA community. Parents and patients all over are working very hard to spread awareness and fundraise for research. Big things are happening, and we can't wait for the first treatment to be approved.
What is one way FA has POSITIVELY affected your life? We are making memories now. There's no room for procrastinating. We have realized FA, or not no one is promised tomorrow.