As parents you want the world for your children. From the moment you start to grow your babies, you do everything in your power to make sure they are safe, comfortable, content, have everything they need and are simply happy.

Often as parents we can read too much into milestones and it becomes conflicting when one child hits them quicker than another. You become anxious when those milestones are missed, but continue to be told not to worry and that 'they will catch up'.

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I became concerned about our little girl, Isla when she hit 18-20 months and her development was very delayed. She had hit her milestones rather quickly up until that point - she rolled, sat up, crawled, walked, said a few words, was eating independently, all the "normal" things.

I saw a few doctors before I was taken seriously. On my final visit, I pleaded with an amazing physician who finally listened and actually heard me, and fast-tracked our paediatric appointment from July 2021 to early March 2021. All the necessary tests were conducted over a week. All genetic testing results were going to take up to eight weeks and, in the meantime, all other tests were coming back "normal".

Fast forward a few weeks and Isla was regularly in and out of hospital. She had lost the ability to walk, stand, and was constantly lethargic. She'd stopped chewing, was choking, was back on puree foods, and her general health had deteriorated very quickly.

As parents we were mortified with our daughter's sudden decline. When speaking with paediatricians, a few, well-known "conditions" came to the surface but not one that outlined the whole picture.

Isla's determination, resilience and strength outweighed all her struggles during this time. I admired her passion and was blown away by her strength as she pushed herself to walk, each day better than the next. Her smile came back and she began to say the words she knew again.

We were then contacted by our paediatrician telling us the metabolic unit at the Royal Children's Hospital wanted to see us immediately due to an abnormality with Isla's bloods. After lots of research I decided to change her diet completely and focus on all her cans instead of her can'ts.

I took it upon myself to see a naturopath and she was put on natural drops. The combination of Isla's diet and the drops proved positive and we started to feel more and more optimistic about the metabolic appointment. She wasn't in agony anymore, she was using her bowls, we weren't sitting up with her screaming and she was sleeping again. Most importantly, our little girl was happy again.

But nothing can prepare you for those words. Nothing can prepare you for the hurt and pain inflicted by those words. As I sat at the Royal Children's with clammy palms, clenching my beautiful little angel ever so tightly, I instantly became in complete denial about the words flowing out of the doctors' mouths.

A neurological disease, which is a defect in her genes. This defect interferes with the ability for her body to get rid of waste and toxins that over time build up in her tiny body. These cells are then affecting and killing off her nervous system and brain cells. Batten Disease, better known as childhood dementia. One in 100,000 children.

I felt my whole body become numb, like someone had ripped my heart out or shot me point blank. My throat started to close over and I could feel each breath become shallower than the previous. The pain in the room got heavier as Harley asked what her timeline looked like. To then hear that this disease that is taking over our beautiful child is not only fatal but has a very short life expectancy and most likely our daughter won't live past the age of five, was something I couldn't comprehend. As I searched each one of their faces desperately waiting for our options to save her, we heard, there is no cure, and there's nothing we can do. How? Why?

I felt my whole being leave my body, I wanted to be anywhere but that room, Then as you feel that same pain beaming off your husband as he loses consciousness, that's his baby, his little girl, you soon realise your grieving process starts then and there in that room.

Friday the 16th of April 2021 - a day we will never forget - receiving the most gut wrenching results that no parents should ever hear. We have been on an emotional bender since that day and you could fill an ocean with our tears.

There is no right or wrong way to feel. We get sad and mad at the world, we are easily triggered by the pain and the very thought that our days are numbered with our perfect little girl is crippling. It's easy to lose control, lose your mind and, for us, the only thing that helps keep us sane are our children, especially Isla, because she's very much still here, lighting up our days. A little girl who creates so much joy when she enters a room, with an infectious aura and huge heart. A little girl who needs us to make her life beautiful and so fulfilled because that's exactly what she deserves.

I have extremely dark days where I can't escape my own mind, but when I look at what I have, this amazing little girl, I remember my duty as a mother, which is to tell her story, one that she can't tell herself. I'm not ashamed, just deeply saddened that I won't get to spend the rest of my days with her.

I need to create awareness for her and this disease which will eventually take over her mind and body but no-one even knows what it is. I'd never heard of it or knew what it was, not even our family doctor had heard of it.

I'm incredibly sad like any parent would be. Some days are good, others not so much. There's nothing that can be said in these situations, which we understand. We are driven by hope that clinical trials for gene therapy will become available to Isla before it's too late. In the meantime, Harley and I will focus on her beautiful nature and what's truly important in life, which is simply being together.

We have a strong support network, a team of people who also feel helpless. All we can do is take it day by day and focus on our mission to get Isla in her very own family home, make her life beautiful and make memories together.

There's something uncanny about being "home" and having that comfort for Isla. Home is truly where the heart is.

You think you have time for these things, but in an instant that time was taken away from us. We are going to face tougher times and harder obstacles, but we will face them together and try to meet every challenge Isla faces.

We would move heaven and earth for our children, to not only be happy but be comfortable as well and that's exactly what we are striving for.

Isla Rain Hunter, a name I won't let you forget, a story I'll never stop telling, a little girl who's changed our life immensely, made us feel things we never thought possible and made us realise the true importance of life, the little things.

She has so much purpose and in her short time here she has already given us so much.

We will never stop fighting for her and with her. We will fight back at Batten and not let it define her.

Her name will be her legacy not this disease. In the words of her incredible daddy, she is just too perfect and too beautiful for this cruel world, a world that will never deserve her.

I know for most of you reading this, especially parents, your heart would have sank. It's extremely painful and we understand we aren't the only ones dealing with things like this. It's hard to comprehend and completely unfair.

I know most parents will hold their children that little bit tighter tonight for that's where real beauty and wealth is felt.