Name: María Mercedes Sebastián
Where do you call home? I’m Ecuadorian, but my parents and I are living right now in Madrid, Spain.
Education/Career: I studied administration and I also have an MBA, but actually I’m not working because working demands a lot of energy that unfortunately I don’t have at the moment. I use my time to prepare my knowledge in other areas like how to be happy and feel near to God. In fact, I’m thinking about studying a new career with something to do with Religious Sciences, I have a couple of options but I don’t decide which one yet.
Who do you live with? I live with my parents, and I’m so thankful for them and me be their daughter because they are the best parents ever always thinking of me, willing to serve and help me.
What’s a typical day for you? A typical day for me is: I wake up like at 8am, then I start the day watching a YouTube video called 10 minutes with Jesus that is about the reading of the day of the Holy Scriptures (I really think that helps me to start my day in a better way). Then my father gives me my breakfast, and when I’m finished with my breakfast, my mother helps me to have a shower. My mom helps me to get dressed and when I’m ready, I exercise like for an hour and a half with my father (because I’m not going to physiotherapy because of the virus). I listen to some music, and like at 2pm my mom calls me to lunch. At 3 pm I start my prayers, (I can’t explain how much peace it gives me I feel that is the moment of the day where I rest). When I finish my prayers, I watch Masterchef Ecuador by YouTube and then some Catholic conversion testimonies and some predications. I eat dinner and finally I read the Scriptures and Catholic Cathesism, at 10pm I brush my teeth, then I say a short prayer and after everything I sleep.
How long have you known you are living with FA? I was diagnosed in Madrid when I was 19, my diagnosis was confirmed by genetic tests in 2008, so I’m living with FA for 13 years.
Are there any others with FA in your family? Not to my knowledge.
Describe your transition from walking to walker/wheelchair. I started to use my wheelchair when I was like 25, in that time I was studying at the university so I needed to move to other classrooms when my class was finished. It was a long distance between classes and I only had 10 minutes, so that’s how I started to use my wheelchair only in difficult situations. But as time went by, I needed to use it permanently. Right now, I can’t imagine my life without my wheelchair because I think that it’s the way to get out and feel alive.
What do you like to do to stay active and what type of exercises work for you to stay strong? I love Pilates exercises, it needs a lot of effort but they’re worth it.
Do you have any hobbies or special interests? As I am a Catholic new converted, because I’ve only been really near to God 6 months (before I thought I was a Christian but it was not true). I love to spend my time with Jesus, opening him my soul, seeking and loving him is the best decision I’ve ever made.
What is a good trick to make daily life easier? My definitive answer with no doubt would be to pray. I’m not alone: He (my wonderful God) fights my battles for me in every single area, I’m only in peace and happy.
When FA gets you down, what do you think/do to feel better? I pray. It’s my solution for everything and it’s impressive how it works; I don’t know why I didn’t take it in to account before.
What is one way living with FA has POSITIVELY affected your life? I think that it has taught me to be patient and perseverant. And in the other hand I’ve learned that I can offer to God my sickness for someone I love or for an intention. Sickness is not a big pain or something that you can’t handle having God in your life.
What is a favorite motivational quote of yours? I can do everything in Christ that strengthens me.
What is a piece of advice that someone with FA has given you that encourages and inspires you? Never give up. I know it’s difficult, but it’s worth it and don’t forget that together we are stronger.
What is the best advice YOU could give a person who has been newly diagnosed with FA? My best advice would be to go to a church, open your heart to God and start seeking him; then he does the rest. If I had done so earlier, I would have avoided a lot of suffering and mistakes.
What is the first thing you want to do when a cure/treatment to FA is found? First, I would run like crazy, and then I would love to help out in an orphanage.
"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? FA doesn’t define me I’m more than that I am a child of God and as child of God I have his support to face everything and everyone.
Tell us a little more about you… Before being close to God, I used to have depression. I remember to spend my days crying and thinking of how miserable I was and thinking of everything that I wanted and didn’t have. But, now I spend my life with a big smile, so I’m sure that we can be happy with what we have. We are beautiful and great as good and special as any other person, or maybe more.