An open letter to my niece, Chloe Saxby
To My Dearest Clucka
I just wanted to put our thoughts on paper and let you know how much we care.
I vividly remember meeting you the day you were born, 8 years ago, and holding this beautiful chubba bubba in my arms and looking into those big blue eyes of yours. I watched you grow into a beautiful toddler and somehow you seemed different to other kids in that you had a strong sense of caring and a protective nature at such an early age. I remember scooping up Maddy, your older sister, to give her a tickle and you came running over to crash tackle me to protect your sister.
You were always a bit “wobbly”, but we put that down to you being a bit clumsy and we didn’t realise the underlying condition that was already beginning to hack into your nervous system.
Then that day came when you fell over in the Kindergarten sandpit and couldn’t get up.
Your Aunty Nicole told me of the news. I shrugged it off as an ear infection that would be clear in a few days with a course of antibiotics. It seemed to carry on for longer than expected and I still refused to consider anything more serious, even when you were sent up to the Children’s Hospital in Randwick. I remember coming to visit you in the children’s ward and had to walk out after a few minutes as the sight of all the sick kids was overwhelming and I couldn’t bear it any longer.
It was a long, hard 8 months of testing and felt so sorry for you as the doctors prodded and poked, and injected you, but you were very brave (even though mummy had to bribe you with lollies), but this has given you an underlying toughness and a fighting spirit. The anticipation was dreadful and my heart goes out to your parents that had no answers for the many questions they had. I was still in denial and thought it might be a bit more serious than an ear infection, but the doctors would have a magic potion to make you better.
Vanishing White Matter Disease (VWM), how I hate that word. I hate it with all my heart, with every fibre in my body. I HATE you VWM, you are the scourge of this earth. The sooner we are rid of you, the better. And mark my words VWM, your time is limited.
Chloe, my darling, we will take care of you as best we can, just like you protected your sister (and still do) we will do everything we can to protect you.
The other week, when I was staying over at your house, I heard your haunting screams in the middle of the night from your head aches and it made me bawl like a baby.
You have taken the campaign in your stride and you don’t seem to be very fussed at all the media attention. I know you get very tired some days on the campaign trail, but hang in there Clucka; we will hopefully raise these funds soon to enable the doctors to speed up their research and find this cure in time so that you can have the life that you deserve.
I apologise for the irritability that we sometimes show, it is not you, it is our frustration with this disease and the sense of helplessness while having to watch you suffer like this.
But know one thing my Clucka, we are in your corner, we will not stop fighting for you and will not give up, so please don’t give up on us.
All my love
If anyone is reading this letter, please consider helping us in our mission to save Chloe. No matter how small the donation, it all helps and we cannot do this alone.