Name: Jasmine Miller
Age: 11 years old
Where do you call home? I have lived in the same home in North Georgia my entire life.
What grade are you in? What do you want to do when you finish school? I am currently in 6th grade. I have always wanted to be a Physician's Assistant or author.
Who do you live with? I live with my mom, my dad, my Golden Retriever, Angel Rose, and several fish.
What's a typical day for you? On Tuesdays and Thursdays, I go to school, which is a University Model school that allows part-time school attendance and part-time home lessons. On Mondays, Wednesdays and Fridays, I complete school lessons at home.
How long have you known you are living with FA? The official diagnosis was received in January 2019, after genetic testing was completed in December 2018, but a cardiologist mentioned the possibility of FA in November 2018.
Are there any others with FA in your family? None of which I am aware.
What do you like to do to stay active and what type of exercises work for you to stay strong? I usually play outside, but I also do daily stretches, balance exercises and muscle exercises. I also take weekly physical therapy and I take horseback-riding lessons.
Do you have any hobbies or special interests? What do you like to do for fun? I write books that I will try to get published when I'm older, I LOVE playing with my dog, and I spend time at my cousins' house and with my mom. I also take weekly piano lessons, compose my own songs and participate in recitals a few times each year.
When FA gets you down, what do you think/do to feel better? I never let myself get down. I always think about the future, and what new cures might be coming out soon, I think of the other people that have FA and think that there's hope and I might not be as bad with new technological advances.
Tell us a little more about yourself...My YouTube channel is named Awesome Ataxia Kids, and I would love to increase the number of subscribers on that channel. I usually talk about FA and other disorders and tell people that there's hope in their lives if they have it. My goal is to eventually be able to interview children with rare illnesses and educate people.
Names: Shea and Amy Miller
Relation to FA patient: Jasmine's parents
What quality or trait has been brought out the most in her despite living with FA? Since the FA diagnosis, Jasmine's charisma, compassion, courage, as well as her spiritual, emotional and physical strength, have all soared, from our perspectives. She has definitely been the strongest one in the family to deal with the diagnosis, and she is certainly a great source of strength for us.
What did you find was the best way to discuss the diagnosis with her and/or another family member? We talked openly and honestly about FA. We also thought it important to remain hopeful.
What advice would you give to other parents whose child is newly diagnosed? Patience is a key to dealing with FA. Learning about the disease, developing new routines and methods of best handling household chores and tasks, planning vacations around life experiences and prioritizing them based on mobility and progression estimates, determining how to best prepare and budget for future accessibility modifications with house and vehicles. All of these things began overwhelming my (dad) brain, and I had to pace myself and organize/prioritize my thoughts. The balance between planning for the future and living in the present is also important, as you want to continue to experience the opportunities and create more memories each day/week/month. Jasmine has special times with each of her parents, as well as special times all together as a family. Lastly, and regardless of illness, I would encourage everyone to take more photos and videos of your child(ren), as technology has allowed for such easy methods to cherish precious memories on which to reflect, so take advantage of it. I (mom) would also encourage seeking out FA support groups through social media.
How have you been encouraged through FA affecting your lives? Jasmine's faith has inspired me (mom). Throughout the trauma of diagnosis and learning to live with the disease, Jasmine's faith has only gotten stronger because she has chosen to trust Him with so much more. Jasmine's recent diagnosis has brought a whole new perspective on the importance of enjoying each day, not taking anything for granted, and cherishing special moments and memories. It has made me (dad) realize that Jasmine's influence on others is ultimately what will make life most meaningful. She will be able to reach different people in different ways due to FA, so God certainly has a special plan and purpose for her life.