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FARAFARA Cure FA

The Batta Family

Batta Family 3Name: Ryanne Batta

Age: 15

Where do you live? Watertown, SD

Education/Grade: I'm a sophomore in high school.

Who do you live with? I live with my parents, my brother Sam when he's home from college, our dogs Buddy and Solar; Solar is my service dog.

What is a typical day for you? During the school year, I go to some classes at the high school and also work from home for other classes. In the summer, I like to spend my days at home by the lake.

When were you diagnosed with FA? I was diagnosed at age eight.

Is there anyone else in your family with FA? No

What do you do to stay active and strong? I go to physical therapy at least once a week. In the summer I like kayaking, paddle boarding and swimming in the lake.

What are some of your of your favorite activities? I like boating, jet-skiing, kayaking, paddle boarding, and hanging out at the lake.

What do you do when FA gets you down? I don't let it get me down.

Tell us more about you. I like traveling, movies, coffee, photography, plays, friends and food!

Batta FamilyRyanne's Parents

Names: Tom & Amy Batta

Relation: Parents

What quality or trait has been brought out the most in Ryanne despite living with FA? Despite years of tests, medical appointments, physical therapy, surgeries and physical changes that Ryanne has gone through, she still has a very positive attitude. She has a way of looking at things like, "I've never tried it that way before". She is fascinated by the medical field and made sure the nurses always kept her monitors facing towards her so she could keep an eye on things after her spinal fusion. Her first word out of surgery was "tacos", so we made sure she had a taco party to celebrate once she was feeling up for it once we were home. She has days that are better than others, but she always finds a way to persevere and keep smiling.

What did you find was the best way to discuss the diagnosis with Ryanne? Ryanne was only eight when we received the FA diagnosis. She was with us when the doctors told us, so she heard everything they were saying. She has never shown any fear for the changes ahead. Beyond what is discussed during medical appointments, we don't avoid the topic, but we don't labor on it either. At eight she was still able to do everything she wanted, maybe at a little slower pace. When she was first diagnosed, the signs of FA were not limiting to her, so we have chosen to continue to live in that mode as best as we can and focus on things she can do. We want to live in the moment with her and make sure she can live out her dreams. If she has questions, we answer them honestly but try to keep them in the present moment. We never discuss all of the "what if" scenarios; honestly, nobody can truly answer them anyway. She is almost 16 now and we do our best to stay present; we are going to keep doing what her body allows her to do today.

Batta family collageWhat advice would you give to other parents whose child is newly diagnosed? Enjoy the moment. Learn to say "yes" to others who want to show up for you and support you; we are not meant to do this alone. Always be honest with your children when they ask questions. Make sure you keep yourself healthy, find what you need to stay strong..... a walk with a friend, a yoga class, a church group, a date night with your spouse. These things have not always been easy for us to do, but we believe we are able to show up better for our children if we can keep ourselves healthy in both mind and body.

Find something every day that you are grateful for, because despite everything happening, there is still something each day that we can show gratitude for.....a hug, a smile, a picture, a day of energy, a funny story, a special person who shows up for your family just when you need it. These small reminders of gratitude give us hope. Also, include your other children in the discussions. We have one other child, Sam who is 19 who has not been tested for FA but shows no signs. He has been along to most of her appointments over the years and has always added an element of 'fun' to the trips. By watching what she goes through, he has become a more empathetic person. The non-FA children also have a lot to deal with, and it's important to address the issues they have as well. They may have feelings of guilt as well as a huge concern for their siblings, yet they are still trying to find their own way. We have always tried our best to include both children in each other's failures and triumphs; my hope is that they always support each other even though their failures and triumphs may be completely different.

How has Ryanne inspired you? Ryanne inspires us over and over again. With her smile, with her perseverance, with her sense of humor, with the way she savors each bite of food as she eats. She inspires me with the courage she shows just to get ready and go to school each day. Our family has slowed our pace down a bit, but in so many ways I'm grateful for the things we see along the way that would perhaps go unnoticed if we were didn't slow down to enjoy them.

How have you been encouraged for Ryanne's future living life with FA? We pray each and every day for a miracle, for a cure. You never know what that may look like, but what we have been blessed to see is a community of people who have found their own ways to help. There have been miles logged by marathoners who have taken time to train and raise money for TEAMFARA, there have been friends who have organized golf fundraisers for FA, there have been friends who have driven miles around the state to sell raffle tickets for drawings with all of the proceeds going to FA, friends in a local band who have donated their time and concert proceeds to FA, there was a middle school full of kids who raised money with Penny Wars between the classes, teachers who have donate funds towards Friday Jean days. These people inspire me; people who not only want to make a difference but take action....they find a way to make each day better. The care from the team of doctors we have at Mayo Clinic inspire me. Of course you wish you never had to take your child to a hospital, but we have made several trips a year over the last ten years to the Mayo Clinic. Each time we leave, we are so thankful for each and every person on her health care team. They care. They are dedicating their lives towards making a difference. They are working to find a cure along with all of the other research teams out there. These people encourage me.

What is one way FA has POSITIVELY affected your life(lives)? Slow down and enjoy each day. Find some time in your day to be still and pay attention....there is always something to be grateful for.

AndreaKiess mtc sig 16

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