Lucy Burns; an Inspiring Tale

Lucy Burns is a GP, entrepreneur, mother of two and founder of Australia’s Biggest Book Group. The book group is a charity event to raise funds for, and awareness of, muscular dystrophy which Lucy was diagnosed with as a 19-year-old.

The type of MD hereditary in her family is Facio-scapulo-humeral Dystrophy (FSHD) which causes upper-body muscle weakness and wasting. MD affects one in every thousand Australians and there is no known cure or specific treatment… but at least it has spared this hard working mum a lifetime of hanging clothes on the line. Her joke, not ours!

As a result of FSHD, Lucy wears a stabilising brace on her leg and is unable to lift her arms above her head but the illness has never slowed her down. Lucy’s warm and lighthearted nature makes you feel comfortable laughing with her when she jokes about laundry chores, or describes her surprise at medical school after discovering no one else had to lie down to put their hair in a ponytail.

But positivity hasn’t always come easily. The most inspirational part of Lucy’s story is that she fought back from a major low point in 2007. A very dear friend of hers sadly passed away; Ellice had been diagnosed with lymphoma in 1997 and lost her fight against the disease just nineteen days after giving birth to her first child. After several months of grief, including a time on antidepressants, she found her strength again and now remembers Ellice as one of her great life inspirations.
With the book group fundraiser now in full swing [see more details on how you can get involved below] Lucy has graciously taken time out to tell us about her experiences.

Knowing that MD is hereditary, did you plan early in life to “kick butt” and face this head on?
I didn’t think very much it about growing up. My dad had it and it didn’t seem to affect him very much so I wasn’t worried when I was diagnosed at 19. I still wasn’t worried at 29, but soon after that, things started change.

Did you always want to be a doctor or did the diagnosis of MD give you the determination to be a high achiever?
I actually wanted to be a vet but you needed physics for that, which I wasn’t particularly good at. I was lucky at school; I was clever and competitive which meant I did well and had a choice of career. The MD didn’t factor into at all because I wasn’t diagnosed until I was in first year medical school. I love talking to people; I think that’s why medicine seemed a good choice.

How would you describe the turning point in your life that came after losing Ellice?
Certainly losing Ellice was very hard. She had been so supportive of me and had been my main sounding board as I came to terms with my illness. I remember her going to Nepal trekking and telling me how she was so appreciative for her life after seeing what had happened to me. Ironically it is now me who is grateful my life after seeing what happened to her. I also think the terrible circumstances about her death and the fact that she had a 2-week-old baby she will never see grow up has certainly made me re-evaluate what’s important.

We love the story of how you read a book called Entrepreneurs Under 40 when you were 39 years, 11 months and two weeks. That was 2008, and resulted in the launch of www.betterthanflowers.com.au right?
Yeah, I decided I should get a move on [laughs]. The business is chocolate bouquets that you purchase online. I donate five dollars from every bouquet sold to Muscular Dystrophy Australia.

How on earth do you manage the role of wife and mother while running an online business and being a doctor?
It can be hard but my husband is fantastic and a very hands-on Dad with the kids. He’s good at cleaning and the kids have jobs, too, which the little one often won’t do! She’s five. I’ve tried to encourage them to be independent and responsible. They have to bring their bags in from the car, empty their lunch boxes, get their uniform ready for the next day. We have chooks and rabbits and its Ruby’s job – she’s eight – to look after them, which she does well.
Plus I have Debbie who I met through a friend about six years ago; she started off helping me with the cleaning while I was pregnant and took on the role of nanny when I went back to work because my kids adore her.
Then, last year, I employed her as in the chief bouquet maker for Better Than Flowers. She runs the business when I’m at work and still does the cleaning and picks up the kids from school. I would be lost without her.

A lot of stay at home Mums aspire to have their own online business to supplement the family income. What advice would you give them?
Definitely do it! Research, reading and plenty of time are the key. You can find much of what you need on the Internet and through books. I even bought Small Business for Dummies, which gave easy to read, clear advice. I also read business success stories to keep me motivated and give me ideas.
You don’t have to have a big budget but a professional approach is important. I invested in a graphic designer to do my logo and all my gift cards and promotional material. I also saved money on the website by going with a company where I can upload all the data myself, without heaps of computer skills.
All of this takes time. I would estimate a good 3-6 months to set up as you are relying on other entities, like banks to get merchant accounts set up, graphic design and website development. The graphic designer took two months to come up with a design that stood out, delivered the message and wasn’t breaking trade marks.

Obviously you’re not working like a woman possessed just to make money, so what is the driving force behind Lucy Burns?
To show the world, and probably myself, that despite physical limitations you can still do it all. I love the idea of saying I’m going to do something and then doing it. It’s very satisfying.
One of the messages I want to pass onto my daughters is that having a disability does not mean you can’t do things. You can still get married, have a family, have a job, look pretty, and have great life. I want to provide my daughters with a good role model in case their hand in life is dealt from my deck.
You don’t need a psychology degree to work out that all of this is about me coming to terms with my situation. I’m happy to tell the world I have muscular dystrophy but it is quickly followed by ‘I’m also a mother, a wife, a doctor and I have online business and I’m running Australia’s Biggest Book Group.’ Yes I have FSHD but there is so much more – it will never define me.

Australia’s Biggest Book Group officially started on May 1st, can you tell us how it works and how we can get involved?
We’re asking people to get together and all read the same book, as one does in a book group, but this is nationwide. We are obviously targeting women in our demographic – late 20’s to late 40’s – so we’ve chosen a book called Versace Sisters by Australian author Cate Kendall. It’s light-hearted, funny chic-lit and we want to make this book group fun and sassy; it’s like Sex and the City meets book group.
My committee who are all volunteering their time, have essentially become the distributors of this novel, so all money raised goes directly to Muscular Dystrophy care and research. We have an ambitious target of 100,000 participants and it’s not too late to get involved. All you have to do is register, buy the book and discuss it at your June book group, or online with us.
I want to raise the profile of Muscular dystrophy and FSHD in the community. I want to do what the Breast Cancer Association has done. They took what is a disfiguring; defeminising disease that no-one wanted to talk about and marketed it with the pink theme. Now big businesses want to be a part of it and have their name associated with breast cancer research which means heaps of money raised for heaps of research.

And finally, when is enough, enough?
Not yet or any time soon; I’m just getting started. My current motto, in the words of Freddy Mercury from Queen, “Don’t stop me now. I’m having such a good time.”

Read more about Australia’s Biggest Book Group in SNOBS’ Pay It Forward section or click here to register and get your copy of Versace Sisters by Cate Kendall, of Gucci Mamas fame.