One day, motor neurone disease will take everything from Sharon. Until then, will you help her make the most of life?
You may have received our Christmas appeal in the mail recently sharing the story of Sharon and her family but we really wanted to share Sharon’s story with you again as it’s one that really hits home about the effects of MND—but it’s also one of hope as we see the amazing strength so many in our community show every day, just like Sharon and her family demonstrate.
Sharon is slowly losing everything that’s ever mattered to her. Motor neurone disease has already taken away her career and her control over her body. She can no longer make her kids’ lunches or give them a cuddle at bedtime. Sharon doesn’t know what the future holds.
We can’t stop Sharon’s disease, but this Christmas you can help her make every moment count – and bring joy to her days.
Your kind gift will mean people like Sharon have compassionate, expert support from the day they’re diagnosed. You’ll help fund mobility aids, home visits and everything she’ll need to be as independent as possible.
I’ve seen firsthand how that practical support changes lives. But for me, your gift will do something even more important – it’ll mean she’ll never have to face her disease alone. Whenever things get tough, she’ll have a team around her offering comfort, boosting her and doing all they can to maintain her quality of life.
Before her diagnosis, Sharon’s life was everything she’d hoped for.
While she was still at university, she met the love of her life Adam – who’d moved to her hometown to become a police officer. Sharon remembers that time fondly.
“We’re both really tall so kept catching each other’s eyes over the crowd at local pubs,” she said.
A few years later, the newly married couple moved to Canberra so Sharon could take her dream job teaching at a high school. Soon afterwards, they started a family. Their first son was sports-mad Harrison, who is now seven. Then came the creative genius of the family – little Hayden, who’s five.
With her two young boys, a promising career and a loving husband by her side, it felt like everything had fallen into place for Sharon. Until the day she noticed the early symptoms of a disease that would change her life forever.
“The first signs that something wasn’t right was a very slight limp. As the weeks went on, I was struggling to keep thongs on my right foot and couldn’t lift my leg properly in the shower to shave it.”
At the time, Sharon thought little of it. She figured she’d overdone it on the netball court, or just needed some rest. After a couple of months, the limp had become worse. Sharon went to her GP who referred her to a neurologist.
“I remember specifically asking if it could be motor neurone disease and the neurologist basically laughed in my face. They said I was a spring chicken and couldn’t have that disease. They said relaxing or doing yoga should help.”
By then, Sharon’s right arm and leg were becoming weak. She went for tests at a hospital in Sydney and received a life-shattering diagnosis.
“Our small sliver of hope was dashed by receiving the news that I had ALS, the most common form of motor neurone disease. The average life expectancy is two-and-a-half years.”
In that moment, Sharon’s world fell apart. She had so little time left. What would that mean for her family? How would Adam cope? What would their two little boys do without her?
In those first hours or days after getting a diagnosis, being able to call our information line can make all the difference. Their call will be answered by a compassionate and knowledgeable person who understands what they’re going through, can answer questions about MND, and connect them to extra support.
Will you please donate today, and help make sure whenever someone like Sharon is diagnosed, there’ll be someone there to help them through it? Your gift will mean nobody will have to face their disease alone – from the day they’re diagnosed, and for as long as they need us.
When Sharon called our information line, she was put in touch with Sue – her local MND Advisor. Just an hour later, Sue knocked on Sharon’s door.
“It’s hard to explain how important that initial meeting was for both Adam and I,” Sharon said. “We had just had our whole world devastatingly turned upside down and had so many questions and uncertainties. Sue was such a calming and informative support at such a distressing time.”
Since then, thanks to the generosity of people like you, that support has been ongoing.
Sharon and Adam have been to information sessions, attended support groups, and had help navigating the NDIS. If she’s had a question or a concern, Sue or Phil on the Information Line have always been there to help. Help and support lacking for most during COVID.
Sharon’s also been loaned equipment through MND NSW FlexEquip services. For many people with motor neurone disease, that service is life-changing. Sharon explained why:
“This disease can progress incredibly quickly so we often need equipment at short notice. It would be impractical to wait for the NDIS so being able to have almost-immediate access to mobility and communication equipment has had a massive influence on my quality of life.”
I’ve seen firsthand how much difference FlexEquip makes to people’s lives. It means people like Sharon can be independent for longer, and live life to the fullest.
I can’t bear the thought of anyone like Sharon missing out on it – or any of our vital services. Will you please give a Christmas time gift and help us be there for everyone with motor neurone disease?
Your gift will help fund the information line and in-person visits from compassionate experts like Sue and Phil, and life-changing equipment. You’ll also help make sure people like Sharon have the support they need as their disease progresses.
For Sharon, that’s meant she lost the ability to pick up her kids, make their lunches or cook dinner for her family. She’s now stopped walking, has difficulty eating and spends most of her day in a wheelchair. She confided that the toughest part of all is seeing the impact that’s had on her kids.
“Harrison and Hayden don’t have the mum that I always wished they had. I can’t play sport with them, read to them, cuddle and kiss them. I can only imagine how hard it must be for my family to watch what’s happening to me.”
Motor neurone disease has taken so much from Sharon, but your generous support means she’s hasn’t had to face it alone.
Your kind donations have helped fund compassionate support workers, state-of-the-art equipment and a whole range of life-changing services.
But two more Australians will be diagnosed with MND every day. As I write to you now, another mum like Sharon may be getting the news they have this devastating disease. Just like her, they’ll need comforting support today – and for the rest of their lives. Which is why I need your help. Will you please make a donation this Christmas?
For Sharon, her family, and everyone who’s lives are touched by motor neurone disease, thank you for your care and kindness.
With my warmest wishes,
(Chief Executive Officer, MND NSW)
P.S. Sharon can no longer walk, care for her family or be the mum she wishes she could be. Today you can help give someone like her the support they need to live the life they love – for as long as possible. Will you please make a donation today?
P.P.S. If you received this letter in the mail you will have found a special Christmas card enclosed for you. If you have this card please write a message of support for Sharon and return it with your donation. I’m sure you words of encouragement will mean a lot when Sharon reads them.