See us on the Today Extra Show! 📺Aviana and myself will be on The Today Extra Show on channel 9 at 10:20am Thursday 16th April talking about The Great Kindness Challenge. Tune in if you can and keep supporting RMH ❤️
Aviana is a bright, happy and sociable little girl who brings love
and laughter to all who meet her. But heartbreakingly at just 3 months of age
she was diagnosed with type 1 SMA (spinal muscular atrophy) a terminal
genetic condition which is like the childhood version of Motor Neuron Disease.
There is no cure and most babies with SMA type 1 are lucky to see their 1st birthday. The disease wastes away the muscles needed for physical activities. Children with this condition are not expected to sit, crawl or walk and over time they lose the ability to swallow, which means they need to be tube fed. As it progresses and they deteriorate further and eventually lose the ability to breathe as their chest muscles become too weak. SMA is a cruel condition that robs children of all of their normal functions. Aviana’s diagnosis was like the start of an absolute nightmare but we were lucky to receive hope in the form of treatment, which was the beginning of a life-saving journey which continues today.
To give Avi the best chance possible, my husband Jonny and I relocated from Darwin to Sydney to trial a pioneering new treatment. As well as coming to terms with the possibility of losing our precious daughter we were also worried about how on earth we could afford to rent in Sydney for three months, this is where Ronald McDonald House Charities Sydney helped us. We were so lucky and grateful to get a room and it really relieved a massive financial burden for us.
Our whole world was in turmoil and I can’t even describe the depression that we were engulfed by. RMHC Sydney honestly helped us through the darkest time in our lives.
We spent our first Christmas as a family there and to be honest it is still the most memorable and special Christmas we’ve ever had. The amount of love shown our little family was second to none. The generosity of others and the kindness we received at the hardest time in our lives carried us through.
I will always remember the feeling of belonging the staff and volunteers gave us. They instantly all seemed to know my name and ask how I was feeling every day. It’s amazing how much a friendly face can help when you’re at your lowest. The little chats every day just cheered me up and made me feel at home. The simple act of offering me a cup of tea & chat about the weather just helped me to forget the horrible situation we were in.
As a first time mum I was struggling with my emotions of trying to do things like “introduce my baby to solids” and all of those normal parenting things whist also learning about a whole new medical world too like how to feed my five-month old baby through a tube. It was the toughest time of my life trying to make sense of it all but staff and volunteers at RMHC Sydney were always there for me. Their encouragement made me feel like “I can do this” when really inside I was feeling so lost and helpless just wanting to make our daughter better and take away her struggles.
We’ve now been travelling back and forth to Sydney every 4 months for over three years and during this time, we have also been blessed with our little boy called Hugo. The bond that him and Aviana have is undeniable and they spend every day together. One of the most special things about RMHC Sydney is that it helps us keep our family together through some really rough times, it really is our second home.
Our children have known the staff and volunteers their whole life, they are like family to us. We feel so humbled by the kindness shown each time we stay at RMHC Sydney which is every 4 months as Aviana needs to receive this life-saving treatment for the rest of her life. I know times are hard at the moment with so many of us, myself included, losing our jobs or source of work. But during this very strange and difficult time for everyone children continue to get diagnosed with all sorts of illnesses regardless of COVID19. There are still families having to pack their bags and move to RMHC Sydney to follow what little hope they have left to keep their child alive. For us RMHC Sydney was a shining light and it really pulled us through, I hope this continues for other families during this pandemic.
We are incredibly lucky and are thankful for both of our children every single day. Aviana is doing so well, she will be 4 in July and is such a happy soul with a resilience that can’t be put into words. She still has a terminal condition for which there is no cure but her treatment has for now paused the progression of her devastating disease. We live each day at a time and are grateful for what we have. She teaches us so much just by being in her presence. The Great Kindness Challenge could not be more suited to a little soul.
She is kinder than anyone I’ve ever known. Even though things for her don’t come easy and she battles every day. She still always puts others first and is fiercely protective over her little brother Hugo. She inspires us to be kind with her positive outlook and cheeky sense of humour.
Thank you to my Sponsors
The Mcelwee Family