Leila DurrName: Leila Dürr

Age: 14

Where do you call home? Pretoria, South-Africa

Education: 8th grade in Afrikaans Hoër Meisies Skool (An all-girls school)

Who do you live with? I live with my parents and my little brother Simon. We also have a big animal family at home.

What's a typical day for you? I go to school with my wheelchair or my walker and when I get to school I switch to my scooter. That's how I get to my classes. After school, I go home and do homework. Then I relax a bit by watching Youtube or reading a book. During the exams, I go to my friend's house to study when we have finished writing for the day.

How long have you known you are living with FA? I have been living with FA for 3 years and was diagnosed when I was 11 years old. We started noticing my balance was off when I was about 10. First, we thought it was an ear infection or something but it was not, and it just got worse until we eventually found out why.

Are there any others with FA in your family? My little brother Simon has FA too.

What do you like to do to stay active and what type of exercises work for you to stay strong? I do occupational therapy, physiotherapy and hydrotherapy.

Do you have any hobbies or special interests? I love to read, and I just started learning to play guitar from youtube and I like photography very much.

When FA gets you down, what do you think/do to feel better? Most of the time I just listen to music or talk to my FA friends.

Leila CollageTell us a little more about you... I love animals. We have 4 dogs, 3 birds, and 12 chickens. I enjoy socializing with my friends, and I LOVE shopping. At the moment I want to be a photographer. I also want to go to Germany one day.

Interview with Leila's Parents

Your Names: Frans and Riana Dürr

Relation to FA patient: Parents

What quality or trait has been brought out the most in you as Leila is living with FA? Appreciation, perseverance, and acceptance. We always try to look at the bright side of anything and take things day by day.

What did you find was the best way to discuss the diagnosis with Leila? Not offering information prematurely. We waited until both our kids started questioning certain things, and then only provide/d the information requested at that time. Our neurologist told us that all a child needs is a mother and a father who offers them unconditional love and support, and it was the best advice anyone has ever given us. We always tell them whatever happens, it will be ok, and we will be there for them. It gives them the confidence to carry on.

What advice would you give to parents whose child is newly diagnosed? Its ok to grieve, cry, get angry, go into denial, and into depression for a while – at the end of it is acceptance and the knowledge that life goes on. Albeit slightly different. Everyone should read the piece 'Welcome to Holland' written by Emily Pearl Kingsley.

Leila Durr 2How has Leila inspired your life? In ways, we cannot describe. We live in awe of how Leila handles life and how she inspires those around her with her positive attitude. She has the aura of an angel. Watch her self-produced video 'ten things about me' here.

How have you been encouraged for Leila's future living life with FA? We feel hopeful and optimistic about a cure – thanks to FARA and all their amazing efforts – we are privileged to be a part of this Family. We are surrounded by such amazing people who help us through difficult times, and who give tremendous emotional and financial support when needed. Leila (and Simon) have very special friends who love them unconditionally. We are an incredibly happy family, and try and see the beauty in each new day, despite some difficult challenges.

What is one way FA has POSITIVELY affected your life(lives)? FA has made us appreciate the small things in life that we all normally take for granted. Like the ability to walk. It has again reminded us, that whilst life is difficult with FA – there is much worse pain and suffering out there in the world, and if all of us put our problems into a pile, we would take our own back.

Brittany Sommerfield Signature