Limb-girdle Muscular Dystrophy Awareness

My Spotlight Interview for the LGMD Awareness Day


Limb-girdle Muscular Dystrophy Awareness Day on September 30th 2016


Have you ever heard about Limb-girdle Muscular Dystrophy? I guess not? Or maybe yes, if you know someone, who knows someone, who’s child is possibly affected by another type of Muscular Dystrophy, such as Duchenne… Indeed, there’s still not enough awareness about neuromuscular diseases in today’s society. And there’s even less knowledge when it comes to Limb-girdle Muscular Dystrophy in particular. So let’s change that!


About two months ago I discovered on Facebook that the Limb Girdle Muscular Dystrophy Awareness Day organization was looking for volunteers who would like to share their LGMD-story in an interview.


Speaking about my story and sharing my experiences in the Spotlight Interview could help others to understand what it means to live with Limb-girdle Muscular Dystrophy. Maybe I can encourage other LGMD affected people around the world to not give up on life.


The Global Limb-girdle Muscular Dystrophy Awareness Day is on September 30th.


Together we are STRONGER!


Here is the Link to the interview :


How I got married…


HandiFashion 2015 – My experience

What is HandiFashion?

In October 2015 I had the great pleasure to take part in the fashion show HandiFashion by Mougins in France. HandiFashion”, which was created in April 2012 by French journalist Corine Tonarelli, is a national fashion concept showing fashion for all. It took place in Paris twice and also in Aix-en-Provence and Aubagne. Beauty and fashion are not restricted to able-bodied as can be seen in these days fashion shows/adds with models like Winnie Harlow, Jillian Mercado or Madeline Stuart. The Handifashion models (with and without disabilities) were chosen at a casting in June 2015. And I should be one of them.


How it all began

On a sunny and warm day last spring I was hanging around at the beach of Juan Les Pins together with my sweetheart. After a while I noticed some people staring at me for a long time but this didn’t bother me any further. But only a couple of minutes later they came over to see me. And WHAT an astonishing surprise: Sonia, who was part of the organization team, really asked if I could imagine to take part in a fashion show, called Handifashion by Mougins, as a model! “Hhmmm, ME, a model in a fashion show with many people !!?? Am I ready for this??!!” were my first thoughts. But I also noticed some arising excitement in my belly – in a positive way. And then I simply replied “Okay! Let’s give it a try! I’ll go to the casting!”. Sonia took a picture of me and gave me all the info about the casting in the following June. At that time I didn’t really believe that I would pass the casting anyway…!


The Casting

Casting for Handifashion

Casting for Handifashion

The day of the casting came and I was very nervous to walk – or let’s better say to “roll” – in front of the jury. Luckily my boyfriend decided to give it a try, too as we were told that it could be fun to see us together as a real couple. And so the two of us had the chance to do the casting, which made it easier! The jury, including Sonia, asked us to present ourselves and we had to answer some questions (like if we had some experience in modeling or acting and how we see fashion in general). The funny thing is that I don’t care for fashion trends or brands. I simply wear what I like – I’m not very girly or stylish and this I told the jury. They then turned up the volume and each of us had to walk up and down the catwalk. I liked the song and did what I would do if I were a model. My boyfriend and I then walked one more time hand in hand. Afterwards I absolutely had no clue about how I presented myself and if my attempt of “wheeling” up and down the catwalk was good or not. Pictures of us were taken and we were recorded on video. The jury told us that we would get news in about 3 weeks time.


And what else should I say: 3 weeks later my phone rang and Sonia asked “Do you guys have anything planned for the 10th of October yet???”. I didn’t get it at first – but THEN – we were chosen! The perfect surprise was that we were also chosen to be the wedding couple at the end of the fashion show! Oh my god! Me as bride and my chéri as groom! This can’t be true! I felt frightened and happy and overwhelmed at the same time. My boyfriend was much more serene though.


The Preperations

We met the other beautifully different and beautifully valid models only once for repetitions. All of them were nice and we had a good time together at the repetition training. I’ve met some people with very inspiring personalities which I do admire! After the repetitions I was really looking forward to the D-day. We met for the fittings twice. My boyfriend and I felt happy with our outfits and the big day came closer and closer.



Due to heavy rain and flooding the fashion show, originally planned for October 10th, had to be postponed to October 31st. This event of delay only increased my excitement…


And there it was – October 31st! At 10:30 am we met the whole crew at Eco Parc Mougins and straight away got to work on our choreography. The catwalk scenery was just amazing. I didn’t expect the Handifashion show to be as professional! As we got to know that there would be more than 400 people watching I slightly felt like escaping… !! But there was no time to think about this fact for too long as we had to change into our outfits twice for training. The whole group had lunch together which was followed by the final repetition. We then had our hair done and got professional make-up (yep, the men too). All the girls and boys looked so handsome! When the make-up artist finished my beauty look it was almost 8 pm! Not much time left neither for changing nor for getting ready mentally. With my hair and make-up I felt pretty, which helped me to gain confidence. My dressing assistants were adorable and they made me relax. I already heard the opening words of our amazing host Matthieu Nina and of special guest Noémie Lenoir (international model and actress). My heartbeat began to race, my hands got wet and I felt sick… “Breath, Melanie, breath!” I told myself. Just minutes before the opening of Handifashion by Mougins 2015 I really did feel as if I would faint! I only wanted the show to start… I was the fourth or fifth model to walk onto the stage. All the other models also couldn’t wait for the show to begin and we all wished us good luck and much fun! The DJ played the first song and the models Margot and James opened the show.



Then everything happened really fast. Our song began to play and I rolled out on the catwalk in my first outfit. And there I was! Luckily I didn’t really see the audience as the light spots shone right into my face. I didn’t even realize the flash lights of all the photographers. My first run was over as fast as it began. I hurried back to the fitting room and got changed. My second outfit showed pretty much skin which made me feel like if I was playing a role – personally I would never even consider wearing a dress like this one…! But the job had to be done and about 20 minutes later I turned back into the spotlight with the beats of Michael Jackson’s “Love never felt so good”. The second time I fully enjoyed the moment. The stress and stage fright were all gone.



The third time on the catwalk should be the highlight for the audience. The lights went out and my boyfriend, dressed as fiancé, showed up on the catwalk with the first beats of Disclosure’s „You & Me“. He tried to find his bride with the help of a spotlight that circulated around. The audience was curiously observing his show. At the same time I impatiently waited behind the scenes for my appearance. Seconds turned into minutes… But then Camille softly touched my shoulder to tell me that it’s time for me to go. I took a deep breath and rolled out on the catwalk in my beautiful wedding dress (by Charm’Fou Mariage), the bridal veil hiding my face. The audience cheered which made me shiver for a moment. My handsome husband caught sight of me and we slowly moved towards each other. He put back the veil and took my hand. The atmosphere felt like in a movie. We deeply looked into each others eyes and finally kissed! This was THE moment, when the audience could no longer sit still, they all started clapping and shouting. My boyfriend and I, groom and bride, walked together hand in hand down the catwalk accompanied by standing ovations. I could no longer hide my big smile. With happy faces we posed for the photographers and I even did a wheelchair turn around myself. Oups, my bridal veil fell back down which wasn’t planned that way! But anyway, I just continued smiling. I felt so relieved and happy at the end of the fashion show! When the final song started to play all the models walked one more time together and it felt like a big party. The audience clapped as there was no end for the models and the organization team. Sonia, Camille, Corine and all the people who contributed to Handifashion by Mougins did an amazing job! They worked hard for months to create this show in their free time without being paid. Everyone gave his and her best to set a mark with Handifashion 2015. After short speeches of the organization-trio the microphone was finally passed on to the mayor of Mougins, M Richard Galy, and to Mister France 2015, Aurélien Giorgino. They announced that the entry fees were donated to AYAME Charity, a charity organization supporting disabled children, especially with Down syndrome. Once more the audience cheered and applauded loudly.



Meeting Noémie Lenoir after the show

Meeting Noémie Lenoir after the show

After the fashion show we had the pleasure to meet Noémie Lenoir. Noémie is such a beautiful woman, I’ve seen her in ads and films before and couldn’t believe that she was standing next to us. She was really nice and together with my groom we took some pictures. Noémie even gave me a kiss on the cheek. She said that I did a great job. Wow! I was so shy that I couldn’t say more than “Thank you!“. With the help of my dressing girls I changed back into my own clothes and so did the rest of us.

Afterwards a private cocktail party was held for the special guests, the models, their families and friends, the organizers and all the designers and brands. Much more photos were taken and interviews given. Of course we celebrated with our family and a couple of friends with a glass of champagne. We told no one that we would be the wedding couple, so everyone was surprised… Many people came to see my boyfriend and me and asked if we were married or on couple for real or if we were actors! There were even some people who had tears in their eyes when we kissed. I was overwhelmed by all the compliments I got that evening. Camille though hoped that my boyfriend would really ask me to marry him, but for us it was clear from the beginning that this wouldn’t happen. But it still was the perfect wedding!


I feel grateful and thankful that I had the wonderful possibility to be a part of HandiFashion by Mougins 2015! I would do it again anytime. This event helped me to leave my comfort zone once more. Seriously, I am not used to that much attention. So after the show and still now I feel proud of myself. I showed up in my power wheelchair and had the night of my life forgetting about my disease and everything that comes along with it.


Long life to HandiFashion! The next edition will take place in Saint Rémy de Provence in October 2016…! Thank you to everyone who made this event possible!


Photo credit: Mathieu Buzzanca
Meeting Andrea Krallinger

A day that changed my life


Today I’ll tell you about a very special photo project and how this project helped me to gain self-confidence by fully accepting me and my disabled body.


First of all I have to admit, that I’ve had a very bad image of myself. I have never seen myself neither as a “real” woman nor I thought of me being beautiful. My body was my weird-looking capsule, rolling around in a wheelchair. Often I even felt ashamed for my strange movements caused by my limb-girdle muscular dystrophy and for being in a wheelchair. I preferred to hide myself whenever possible to not attract more attention than usual. I had no self-confidence at all and didn’t feel good in my skin. There were times when I silently cried in my bed, asking myself why I was chosen to have this mean LGMD disease. But one day in 2012 would change everything …!


While I was reading a magazine of the German MD Association, my eyes stopped at a text saying “Participants for special photographic project wanted”. I don’t know why, but my inner voice told me to apply immediately. That’s how I got to know the German photographer Andrea Krallinger and her beautiful project “Ganz schön krank” (free trans. “pretty ill”). Andrea, having an invisible disability herself, took pictures of people with all kinds of disorders, focussing on their beauty – not on their faults. The photos of Andrea’s models were art printed are still being exhibited all over Germany and even abroad. Each art print is accompanied by a personal introduction, written by the model, describing briefly her/his life with a disability.


So, together with my brother I met Andrea in August 2012 on a wonderfully warm summer day. But actually, only one day before the appointment I wanted to cancel it! I was scared and I thought that I was not good enough for Andrea’s project. I felt very uncomfortable, I didn’t even have a clue how to dress. I was simply afraid to not fulfill  Andrea’s expectations… Luckily my brother insisted on going! And so we did! On our way to the meeting I was so nervous that I couldn’t eat a thing. We met Andrea in a train station. We had a great time together and got along very well – there was no need to be that nervous. Together, we discovered a nice little park where the shooting took place. Thanks to Andrea’s guidance and her reassuring words I overcame my shyness and suddenly I felt good in front of her camera. This was my first shooting-experience. Some days later, when Andrea sent me a link to my pictures, I couldn’t believe that this young, beautiful woman was me. For the very first time I saw my bright smile and my sparkling eyes. And for the very first time I saw my hidden beauty revealed.



Thanks to Andrea’s project, I received lots of mails by interesting people telling me that I had a very positive appearance and a beautiful smile. Thanks to her I made many new friends. Thanks to Andrea I met my love Xavier only two months after the shooting. Thanks to her I had the chance to do a photo shooting for wheelchair manufacturer Sunrise Medical.

Thanks to Andrea and her “Ganz schön krank” project I learned to truly accept myself as I am! There was and is no reason to hide my smile any longer. Today, in 2016, I am a confident and joyful woman on wheels. Thank you so much for everything you did, Andrea!

– LittleMissTurtle in the German TZ news
– LittleMissTurtle is “Ganz schön krank”