Amy Lynch had her whole life ahead of her.
The then 27-year-old and her partner Simon were the proud parents of two daughters and led a “normal, happy life” on their farm in regional Victoria.
But in August 2022, their lives changed forever when Amy was diagnosed with motor neurone disease (MND), a terminal neurological condition that affects the brain and nerves.
‘Living with MND is like being trapped in your own body. I am a lesser version of myself,’ Amy, now 29, told FEMAIL.
Before their shocking diagnosis, the young couple repaired broken fences on their farm, fed cattle and visited family in Melbourne.
Amy is now quadriplegic, barely able to speak and unable to perform simple tasks such as dressing or showering herself. She receives constant support from caregivers and family.
The hardest part of her tragic situation is the thought that she will miss the milestones of her children growing up.
“For as long as I can remember I wanted to be a mother, now that I am one it feels so unfair that my daughters will never know me without this disease. They will not see their mother and father together as we dreamed of on our farm, living a busy but simple life,” said Amy.
Amy Lynch and her partner Simon are the proud parents of two baby girls and lived a ‘normal life’ tending to their farm in regional Victoria. But in August 2022, life as they knew it changed forever when Amy was diagnosed with motor neurone disease (pictured before diagnosis)
‘Living with ALS is like being trapped in your own body – I am an inferior version of myself,’ Amy, now 29, told FEMAIL (pictured before diagnosis)
Now Amy is a paraplegic, she can barely speak and has constant support from caregivers and family, but her mind is still active with thoughts (pictured today)
The mild symptoms started when Amy was seven months pregnant with her second daughter Georgia in 2022, but at the time doctors thought it was pregnancy-related.
She began to limp and develop a waddling gait. Towards the end of her pregnancy she began to suffer from severe cramps, leg cramps and fell frequently.
Amy herself did not think there was anything serious going on, but admitted that it was unusual.
After giving birth in May 2022, her symptoms worsened and five days later she had difficulty cutting food and her limping became worse.
Before Amy was diagnosed, she enjoyed styling her hair, but she found that even the simplest task was difficult.
“My arms would get sore when I washed or blow-dried my hair, which I did once or twice a week,” she said.
One day, when Amy was changing Hannah’s diaper, who was then 18 months old, the baby kicked her, causing her to stumble backwards and hit the door.
Then Amy knew something was ‘wrong’.
The mild symptoms started when Amy was seven months pregnant with her second daughter Georgia in 2022, but at the time doctors thought they were common pregnancy symptoms
The causes of MND remain unknown and there are no treatment options available. Currently in Australia there is only one medication approved by the TGA that slows the progression of MND. As Amy is still breastfeeding Georgia she is not eligible
Despite undergoing multiple tests, they showed no signs of anything wrong. So a ‘process of elimination’ began before they came to the conclusion that Amy must have MND.
There is no test for ALS, which means doctors must rule out all other possibilities before making a diagnosis.
This also meant that she likely had just over two years to live after being diagnosed.
“There’s nothing that can ever prepare you for something like this, it’s an emotional rollercoaster where you wonder what’s going to happen next. Am I going to wake up tomorrow and not be able to talk? Are my legs still strong enough? Am I still going to be able to eat and drink?” Amy said.
‘Thinking about our future is something I always dreamed of and now we’re planning more month by month. It’s too heartbreaking to think about what I’m going to miss.
“I think I am incredibly lucky that I can concentrate on my two beautiful daughters.”
Shortly after their diagnosis, Amy and Simon decided to get married and they organised the wedding with a guest list of 100 people within five months. It was a joyous occasion.
Life today looks very different than it did in 2022, but Amy is taking it one day at a time.
She can’t drive, needs a walker to get around the house and a wheelchair when she’s in crowds and has to travel long distances. Amy can’t even pick up her children anymore.
‘MND progresses differently for everyone. Let’s hope I’m around for a while. I hope that as a younger patient I’m an anomaly,’ said Amy
The causes of ALS are still unknown and there are no treatment options available.
Currently there is only one drug approved by the TGA in Australia that slows the progression of MND. As Amy is still breastfeeding Georgia she is not eligible.
“We try to live as normal a life as possible. We still go on vacations, road trips, and take our trailer,” she said.
Amy’s eyes fill with tears as she thinks about her future and her family’s future, but she tries to stay positive.
“I always say there’s no point in being sad when there’s so much to be happy about,” she said.
She also notices that people treat her differently.
“If you look disabled, people treat you as disabled, even if your mind is fine. I still think at exactly the same speed as I did before I was diagnosed, it’s just that my body can’t keep up,” Amy said.
‘So it is important to treat everyone equally.
‘MND progresses differently for everyone. Let’s hope I’ll be around for a while. I hope that as a younger patient I’m an anomaly.’
In the bullet points you will find a link to Amy’s GoFundMe campaign
