Having been diagnosed with FSHD only about 3 years ago, my progression has been swift and in a lot of ways I have not been prepared, either emotionally or financially for this new life direction. About 12 months ago, I started using a wheelchair and I was most surprised to find that it has not been the negative and limiting step I had thought it would be, it has liberated me and meant I can get out and about with my family and do the things I love. Unfortunately, it has also meant that I had a lot of lifting putting it in and out of my little hatch back car. This lifting took its toll and has resulted in me dislocating my shoulder and tearing the ligaments which required surgery in late July. I can’t lift the manual chair anymore, or even manage to self propel since my surgery, so the electric chair is the way forward for me. There will be no way I can fit an electric chair into my little hatch back, with even fitting the manual chair in is like playing a game of tetris.

This has been a huge threat to my independence because unless my husband is with me, I currently can’t go anywhere that requires more than a very short walk. On 4th July 2015, FSHD Global Research Foundation held their annual Chocolate Ball, with the theme of “Independence Day”. I was given the honour of speaking at the Chocolate Ball, sharing my story on living with FSHD. In keeping with the theme, I spoke about how I use health aids and other tools and equipment to maintain as much independence as possible. In my speech I talked about this and about how this injury has meant I now have to purchase an electric wheelchair and a new car that will accommodate it. Of course, the ultimate goal towards independence is a cure for FSHD. While we wait for that though, I would still love to be able to work, take my kids to school excursions and family outings, go shopping, go out with friends and live life to the fullest so the chair and car are both very important. The intention I had when sharing some of my personal fears, challenges and victories in living with FSHD, was to give the guests at the ball some insight into what it is like to live with this relentless condition, and help everyone there to understand what a cure will mean to me, and all FSHD patients. After my speech had finished, I was back at my table enjoying one or perhaps two glasses of Moet (just to relieve the nervous tension of course!), when our gorgeous host, Jamie Durie, made an announcement. A generous donor, had pledged $150,000 to the foundation and had also decided to donate a car for me! I was absolutely speechless. In complete disbelief. I may have cried. Not only did this generous man purchase a car suitable for wheelchair conversion, he has organised for Automobility to convert my car so that it will have an electric ramp and I can drive right into the back seat and either remain in my chair for the drive, or exit the car and drive from the drivers seat. My car is in at the workshop right now and should be completed in the next month or so. I am still completely overwhelmed with gratitude and cannot believe that anyone would be so kind and generous to someone they do not know. Even though I am working in a good job as an Accountant, this kind of car and conversion would have been well out of our reach financially. I had just accepted that the time would come where I could really only go out with my husband or another carer and that I would have to rely on public transport but with this amazing gift, I will be travelling independently and reliably for a long time yet. Attending the Chocolate Ball changed my outlook on dealing with this disease. Listening to Bill Moss share his story, the wonderful scientists and researchers who are dedicating their lives towards a cure, and of course having the opportunity to share my story was amazing. After I spoke, I had so many people come and speak to me and everyone was so supportive and positive, it was amazing. But then to also have this gift of a modified car, well that just still doesn’t seem real or possible. I don’t know that I will ever be able to pay it forward to this degree, but I hope that I can continue to live my life in a way that makes me a deserving recipient to this blessing. I can’t wait to see it, I don’t even know what colour it is! My girls were home when the representative from Automobility brought the demonstration model to our house and they are very excited about the side opening doors and the fact that I will sit in the back with them.

I am planning on attending the Chocolate Ball again this year, and by then I should have the car and my new chair so I look forward to seeing many of you there and telling you all about it. It is an amazing, inspiring and hope filled night of spectacular proportions, and for me, it has been life changing.

Emma Weatherly