1. What type of condition do you have and when were you diagnosed?
My name is Melanie Bordes, and I’m 31 years old. I am German and grew up in Bavaria near Munich. I live near Nice in the South of France with my French husband, Xavier. At the age of 4 1/2 years, I was diagnosed with an in 1991 unknown type of early onset muscular dystrophy. I already showed symptoms at the age of 2: I fell on my face each time I tried to climb stairs, I’ve never been able to run, I had weak legs but calves like a football player, I walked like a duck, had trouble getting up from the floor, etc. In 2009 genetic research confirmed two mutations in the FKRP-gene, which means I have compound- heterozygous LGMD2I. I have been using a wheelchair full time since the end of 2014. I now need help for almost all the tasks of daily life. Just recently I’ve received my very first power wheelchair.
2. What was your initial reaction to receiving your diagnosis or to finding out about your condition?
One of the first memories that comes to my mind is the four and a half-year-old version of me crying angrily in our living room for hours. Since kindergarten, I knew that I was very different from other kids of my age because I just couldn’t run, jump and move as they could. I remember asking my Mum over and over again why I had to have this disease.
3. What is the most challenging part of living with your condition?
The most challenging part of living with early onset LGMD2I is to see my body progressively deteriorate without being able to do anything about it. I have to accept the loss of abilities over and over again and continuously find solutions to adapt to new situations.
4. If your condition is progressive, any comments on how you deal with and adapt to the changes?
Out of my own experience, a stable mindset, good friends, and a caring family are the key to avoid depression or bitterness. Staying active and social is essential to slow down the progression a tiny bit. Adaption for me means using mobility devices instead of falling and hurting, asking loved-ones for help, insisting on proper medical care, becoming an expert of my disease and making my environment (home/workplace) as accessible as possible.
5. If diagnosed as a child, how did your family treat your disability? How has your condition impacted your personal relationships through the years, if at all?
At first, my Dad and grandfather had problems to accept the condition as well as the fact that it is genetic. They kind of said, “it wouldn’t come from their genes.” Luckily I was too small to understand the situation at that time. My Mum was very sad when we received the diagnosis, but she learned everything she could about LGMD and treated me like a healthy child. My disease has never been that much of a problem for my family and friends. We grew into this as a family.
6. Who has been the biggest influence in your life and why?
My grandmother has always been the one who supported me the most. She is an incredibly strong woman, and we have a powerful connection. My grandma helped me through the most difficult situations in my life. She helped me to stay strong when I couldn’t see the daylight anymore.
7. Did you ever have a time in your life where your disability caused you to become very ill or caused other difficulties (injury, complication, etc.)? How did that time affect you emotionally and describe how it might have strengthened you.
I had routine surgery at the age of 6 and received inhaled anesthetics that caused extensive bleeding over several days. For two days I fought for my life in the ICU. I got blood transfusions as well as plasma. It took three weeks in a specialized children’s hospital to recover. During that time I cried a lot! Especially because I was alone in the hospital. My Mum wasn’t able to stay with me as she needed to take care of my little brother. However, she and my grandparents visited me as often as possible. Although this situation left invisible scars, it also taught me to resist and to rely on myself.
8. How did your interest in travel develop?
My family traveled much when I was a child. Each year we spent our holidays in Europe in our RV. When I turned 18, I flew to Barcelona only with a friend of mine. Although at that time Barcelona was not as wheelchair-accessible as it is today, we had a fantastic time together. From that holiday on, the travel fever got me. At first, I traveled to mid-range destinations like Kos (Greek Island) and Tenerife (part of the Canary Islands). My first long-haul flight took place in 2011. My stepdad and I flew to San Francisco and spent three weeks traveling around the US West Coast in an RV. One year later Xavier and I met and from that moment on we discovered the world together.
9. Traveling with a disability can be very challenging, to say the least! What have you found to be the greatest challenges and how have you dealt with them?
Traveling as a disabled person needs much planning, but it is doable and worth it. The most significant challenge is to find reliable (the magic word) information about the accessibility of the places you like to visit. Finding adapted hotel rooms can be tough depending on the country you wish to travel to. I always do much research before planning my trips. Part of the planning is to call the airlines to ask for wheelchair assistance, to send emails to the hotels asking for details about the accessible rooms, and to find out everything about accessible transportation, etc.
10. Do you have a favorite place you’ve visited? What are places at the top of your list to visit in the future?
These three places all are my favorites: Cape Town, Banff & Jasper National Park and Tokyo. In the future, I would like to visit Israel, Alaska, Utah, and New Zealand.
11. Feel free to share your top travel tips!
Plan your travels as early as possible to get lower prices for flights and accommodation. Find out as much as you can about your destination. Read travel blogs ;-). Make sure the airline, as well as the hotel, are informed about your needs.
12. Where can we read more about your travel adventures? (And tell us about the nickname Little Miss Turtle).
In 2016 I started to blog about wheelchair travel and life with LGMD. The blog is called Little Miss Turtle (www.littlemissturtle.com). I didn’t want my blog to be “just another travel blog,” and that’s why I chose a name that stands out. Little Miss Turtle is a name creation that’s very ‘kawaii’ (Japanese term for cute), and it describes pretty well how I moved around when I was still able to walk. Slowly but surely – just like a turtle.
13. Do you live by a certain “motto” (saying)?
Carpe Diem. Enjoy the present, live the moment and don’t worry about the future. I am thankful for every good and bad day of my life.
14. What is the most important factor that has helped you overcome challenges and cope with living with your condition?
The support of my husband, my family, and friends.
15. If you were speaking to a young person who lives with the same type of condition you have, what advice would you like to give them?
Live your life and don’t worry about your disease. Be kind to your body, stay active, enjoy childhood / your teenage years and don’t give up. You are so much more than your condition! Learn to accept it and live with it instead of fighting against it. Leave a spark of hope inside your heart – as one day in the future there might be a treatment.
16. If you have attended a Speak Foundation conference please share about what this experience was like for you. How did it impact you? What was the highlight of the conference?
In 2018 my husband and I attended the Speak Foundation Conference for the first time. I appreciated to meet Facebook friends in real life and to connect with new ones. Sharing our stories and experiences felt good! The highlight was the talk of Dr. Michael Triplett, the CEO of Myonexus Therapeutics, on their gene therapy development for LGMDs. The NMD community is so unique, as everyone understands how you feel. We will surely attend next year’s Speak Foundation conference.
17. Is there anything else you would like to share about yourself?
Stay strong :-).
Published October 2018