Brianna’s story

Brianna-comms-manager

I can’t honestly say that I remember the moment that I was diagnosed with muscular dystrophy; I was four at the time and little did I know my life would be changed forever.

While some may think for the worst, I have learnt it was possibly for the better. It has taught me patience, compassion, to be grateful for what you have, to never take anything for granted and to make the most out of every opportunity.

Brianna and Katie as kids Brianna and Katie as kids

I’d always walked on my tiptoes and had well defined muscles. Mum and Dad joked that they had an athlete on their hands. They were the only symptoms I showed and had it not been for my older sister Katie, I wouldn’t have been diagnosed at such a young age. You see Katie (4 years older than me), was taking dancing lessons at the time. Her teacher commented to mum that Katie could not jump as high as the other girls in the class or get up off the floor fast enough. It was at this point Katie was taken to her GP who said she needed to see a paediatrician.

Brianna

After many tests and months of waiting, Katie was given an official diagnosis; Autosomal Recessive Childhood Muscular Dystrophy. At the same time they decided to test me which showed that my muscle enzyme count was extremely high, indicating rapid muscle breakdown. This meant that I had the same condition. My parents had been dealt a double blow; Mum said it was like her stomach just fell away. I think for me, it was easier to accept the condition by watching Katie go through it first. As a young child I don’t think I realised that I would soon be facing the same challenges as my sister.

I got my first manual wheelchair at age 12 as I was falling over regularly at school and conquering long distances became too hard a task. Fortunately I had a great group of friends who accepted this and continued to include me in everything.

My first electric wheelchair at 13 gave me a freedom I had never experienced before. Although this was pretty much the end of my walking days, it meant I could go wherever I wanted. I didn’t have to struggle to push myself or ask for help. I could ‘walk’ home from school with my friends and go down to the local shop for mum. And yes, more than once I have ended up bogged in a ditch!

Having never been a much of a scholar, I had decided university wasn’t for me. After school I went to TAFE and studied Community Services, whilst also working part time at a research institute. Through my work, I got to know the team at Muscular Dystrophy WA and was offered a position with them. 13 years on and I’m still here.

I currently work full time as Communications Manager and I have to say, I love my job. I don’t consider myself to have a disability. I have a health condition that limits me physically – but that’s where that stops. I think there is a huge stigma around having a disability – that you are automatically either less of a person, or an inspiration just because you get on with your life. People often assume that being in a wheelchair and having muscular dystrophy means that I’m sick or unwell. It’s not the case. Yes, I have regular appointments for neurology, physiotherapy, occupational therapy, respiratory, cardiology but they all just tell me to keep doing what I’m doing.

Having muscular dystrophy affects me daily as I need help with almost everything I do. Turning over in bed, getting up, showering, going to the toilet, getting dressed, brushing my hair, and so on. But it doesn’t define me or stop me from wanting all the things that everyone else does.

Brianna travelling Brianna has never let Muscular Dystrophy stop her from travelling

Although I can’t be physically active, I try to be as active as I can in other areas. As well as working full time, I’m on a few committees for other organisations and I am very social. I travel whenever I possibly can, my best holiday moment so far has been flying over the Grand Canyon in a helicopter. I try and eat well, spend time outside and time by myself. Being a dedicated aunty to a tribe of my cousins’ and friends’ kids, keeps me grounded. Their acceptance of me, just as I am, gives me so much strength.

My mum is an amazing woman, she has selflessly cared for my sister and I for all of our lives and without her I don’t know where we would be. Mum really is the reason I am who I am today. She never expected less from my sister and I just because we have MD. Mum expected us to finish school, then study or work. There was definitely no sitting around at home feeling sorry for yourself. She also taught us not to let anyone tell us we couldn’t do something, we might just have to find another way to do it.

I can’t say that I don’t get angry or frustrated that I have this condition that has robbed me of my muscle strength, and that I don’t hate not being able to do things for myself because I do sometimes, but I just think there is always someone worse off than myself. I’m able to communicate my needs, to see and hear beautiful things and for those things I am truly grateful. I never thought that I would have got to where I have, or that I would have travelled the world. I have met so many wonderful dedicated people that have changed my life all for the better. Some of my closest friends have been made through my connections to muscular dystrophy.

I’ve been given so many opportunities that would not have been offered to me if I didn’t have MD and best of all I’m alive, I have a life that I love and I have the opportunity to help people and make a difference.

To join Brianna in raising funds and awareness for Muscular Dystrophy in WA, please visit https://mdwa-hbfrun.everydayhero.do