A 15 year old girl’s insight to living with muscular dystrophy

My name is Jasmine and I am 15 years old.

Earlier this year I attended the Very Special Kids 30th Anniversary Gala. In front of 300 people, I made my way on stage and I shared my story. My heart was racing and my nerves were high.

Like most people public speaking makes me nervous, but I know I am lucky to have a voice, I know I’m lucky I have the ability to express myself, especially since I have met so many that can’t.

I have Muscular Dystrophy. A rare genetic condition that that occurs one in 3,500 boys born and one in 50 million girls born around the world.

Not many people know what it means to have Muscular Dystrophy but to put it simply, my muscles are failing me. It’s a neuromuscular disorder that causes progressive and irreversible, deterioration of the muscles in my body.

I learnt how to walk as a toddler but over time my body become too weak and now I am in a wheelchair. My lungs are too weak to breathe on my own during the night. Every morning when I come off my breathing machine, I learn how to breathe again, before getting ready for school.

One of the lucky ones.

My life can be a challenge, but so can everyone’s. I am lucky to have the most amazing family and friends whose tireless devotion and compassion to giving me the best life possible, has provided me with the most amazing opportunities and experiences. Like the opportunity to meet the team at Very Special Kids, who provide care to over 900 families each year. Families just like mine.

You might think I am unlucky but I still think I am one of the lucky ones.

Over the years the Very Special Kids Hospice has felt like my second home. So when I say Very Special Kids provides care, I don’t think that really covers what they do. I might be a very special kid, but they are a very special organisation.

Mum says as a child I was very matter of fact about my condition, one day I turned to her and said, ‘can’t stand up’ and that was the beginning. I can’t remember a lot of the early days but I do know that they were probably the hardest for my family, which is why I am so thankful to know that Very Special Kids was around from the beginning.

Family means everything.

When I hear mum talk about what it was like for her and dad to learn that I wasn’t going to grow up healthy and strong like the other kids, I am so glad that Very Special Kids was there to help. My family means everything to me and from the moment we needed them Very Special Kids was always around.

When things started to get really tough, Anne came into our lives. She was our Very Special Kids home volunteer, she would visit my brother and I, so mum and dad could run errands or just have a moment to themselves. She’s not our volunteer anymore, but she’s still our friend.

As a family we have had holidays at the Very Special Kids Glen Osmond Farm, it’s equipped with wheelchair access and carer support, which means everyone gets a break, but we all get to be together. Most recently I’ve been attending the Girls Weekends at the Hospice, where I get to do so many fun things, with other kids just like me.

Making friends and life at school.

Day to day I sometimes feel like the odd one out, but at Very Special Kids, I feel like l belong.

No one looks at me as the girl in the wheelchair, or the girl with tubes up her nose, I’m not Jasmine the girl who can’t walk or the girl that never seems to grow. I am just Jasmine, a teenager, who loves to laugh, watch movies and read comics.

The Very Special Kids Hospice means so much to me, and I know it does for so many other kids too. Very Special Kids helps each of us find our way through, it’s a place where we can come together, and our unique conditions are not treated as something to be scared of. We can be ourselves, we can feel ‘normal’.

I’ve met some of my closest friends through Very Special Kids, I love talking to my school friends, but they don’t always understand.

There are girls at school who worry about which boy doesn’t like them, but I guess my priorities are different. My family and my friends are what matter to me.

I met Lucy at a Very Special Kids Girls Weekend, she has Cystic Fibrosis. We don’t get to talk every day, but when we do, we pick up the conversation right where we left off. We can talk about everything, because we go through things that not many other kids our age go through. The countless medications and hospital trips, the fears, the worries, the challenges and the wins, no topic is off limits.

Without Very Special Kids, I would never have met Lucy. And without support from the community Very Special Kids wouldn’t have been able to run the Girls Weekend at the Hospice that we met on, so thank you.

My brother Jacob.

It’s not just me that loves Very Special Kids, but it’s a special place for my brother Jacob too. No one asked for my condition and no one is to blame, but I know it affects everyone in my life. Maybe Jacob the most.

Jacob is 13, he has had to live with my condition his whole life, he would never say it but I know there are times when has had to make sacrifices and come second to my needs. But at Very Special Kids, he is given the chance to be around other kids, and more than anything he can just forget for a moment and have some fun.

Thank you for your support.

I have written this letter as my way of saying thank you. To anyone who helps support Very Special Kids, please know that your support has made such an incredible difference to my life and to so many others.

Very Special Kids is the only children’s hospice in all of Victoria, and they care for over 900 families just like mine each year. It’s my wish to help raise as much money as I can to help ensure that Very Special Kids can help all the families out there just like mine.

We are often the families that people forget about, but I know Very Special Kids will never forget us. So please take a moment and make a donation, to help provide love and support where it’s needed most.

Thank you.
Love Jazzy

All the funds you raise at the 24 Hour Treadmill Challenge will go directly to children just like Jasmine, who receive 24 hour specialist care at Very Special Kids Hospice. To make a donation visit: www.vsktreadmill.org.au