Amy is a wonderful, vibrant, young mother of two little girls, Hannah and Georgia. In August 2022, her world was turned upside down when she was diagnosed with motor neurone disease (MND) at just 27 years old.
Please take a few minutes to hear Amy's story in her own words. We hope it gives you a glimpse of the caring and resilient young woman she is.
I always dreamed of being a mother. I’m naturally very maternal and love spending time with kids and animals. So my husband, Simon, and I were overjoyed when we welcomed our first baby girl, Hannah, in December 2020. 17 months later, we welcomed our second baby girl, Georgia.
Motherhood is never quite what you expect it to be, and often it can be challenging. But for our little family, things are tougher than for most.
At only 27 years old, when Georgia was just 10 weeks old, I was diagnosed with motor neurone disease. Being so young it’s quite rare, but not unheard of.
MND is a prison. One of the hardest things is that I feel perfectly normal but then I go to take a step and my leg doesn’t respond. Or I go to move my hand and it doesn’t go where I’ve told it to. It’s very frustrating to be trapped in my own body. My mind is fully active, but my hands, legs and tongue don’t do what I ask them too.
I first noticed something wasn’t right when I was pregnant with Georgia. I started walking a bit funny, but being pregnant I didn’t think much of it. I was still able to do everything - potter around our farm, chase after a 1 year old, renovate our house.
A few days after having Georgia, I started to have weakness in my hands, and when I left the hospital, I was walking a bit funny again and used the pram as a walker.
But then a couple of weeks later, I was playing around with Hannah and she pushed me over a couple of times. She was only 18 months old at the time, so it was quite shocking that she was able to knock me off balance. That’s when I went and saw our local GP. He sent me for every test under the sun to try and find out what was wrong.
He said: “Don’t be alarmed. With the marvels of modern medicine, they can pretty much manage or treat anything. You’ll have a normal life.”
Little did we know, I had one of the diseases that has no known treatment or cure.
When Trish, our MND Advisor/Support Coordinator called, it was a very sobering moment to realise this is really what we’re looking at. There’s almost a bit of freedom when you don’t know what’s wrong with you yet because there’s a chance there’s nothing wrong. You definitely never think it’ll be what you end up with. MND really is the worst.
Right from that very first phone call, MND Victoria’s support has made a lot of difference. Trish helps us navigate the NDIS and gets us connected in with all the support services which is invaluable. Because without that bit of guidance, we wouldn’t know where to start.
Living on a farm in rural Victoria can sometimes make it tricky to get access to things, but Trish has been terrific is sourcing services and suppliers who are happy to travel to the area to support me. Especially because often a carer isn’t just caring for me – they’re helping me while I care for the kids.
MND Victoria’s Equipment Library is such a valuable resource. Knowing that there’s easy access to whatever I need is amazing, especially as we don’t have to pay for it. You find that when you need something, you’re usually needing it yesterday. So we’re very lucky to have it already there and waiting. All it takes is a request to our OT and then MND Victoria just send it out and it’s here the next day. Equipment like my power wheelchair, my Obi Robotic Arm Feeder, and my iPad with eye gaze technology give me the freedom and ability to remain as independent as I can. They give me a new lease on life.
One silver lining of my diagnosis is that we get to spend so much time together as a family. Simon primarily works from home so he can be there to take care of Hannah, Georgia and me. We go on as many holidays as we can and travel around to see all our family and friends. We do all the things we want to do, but we know our timeline to do these things is shorter than for most families.
I’m quite a caring person and always put my energy into making other people’s lives better, so it’s quite surreal that now I’m the one being cared for. We only have a young family and the last thing we want is to not have that together. Our life’s just starting off, not finishing up. So the longer I can be part of that and be in the middle of it all instead of watching from the outside, the better.
We’re trying to keep life as normal as it can be and make lots of memories with the kids. And the support we receive from MND Victoria really helps us achieve that.
- Amy Lynch