Our world was turned upside down five years ago when my beautiful little niece, Chloe was given a death sentence. She was diagnosed with Vanishing White Matter Disease - we had never heard of it and wish to god we had never heard of it to this day. I don't think you could dream up a worse disease. Chloe lost the ability to walk overnight, next she will lose the ability to speak, see, hear, eat, swallow, hold her head up....she will experience alot of pain and suffering and die at an early age.
Every day I see my sister's heartache, her struggles and the nightmare that she is living. And I would do anything to change that.
So I have decided to walk 100km in the Walk for Chloe. Given I am the least fit I have ever been, and walking for me is to the bus stop - across the road from my house - this is not going to be easy, but it is nothing compared to what my sister and Chloe face every day. How lucky am I? I have two legs that work.
What I wouldn't give to see Chloe walk again. She deserves the right to finish primary school, finish high school, dance the night away with her girlfriends, she deserves the right to live.
Research towards a cure/treatment is progressing well, with some further breakthroughs recently, we have real hope, but we need to speed it up in time for Chloe. The only thing that can do this is additional funding. We don't have time to lose. Life expectancy is only 5 to 10 years from disease onset.
There is no government or pharmaceutical funding - because this disease is so rare (only 7 cases in Australia) - it is left up to us to fund the research into the cure/treatment.
For this reason, I would really appreciate any donation you can make - large or small - every dollar raised goes towards this life-saving research into a cure to save my niece, Chloe and children like her.
Forever grateful and determined!
Nicole Laurie
Chloe's Aunty
To my awesome Nixx, wish it could be more! SO proud of you! And to bless Chloe! With our love, SA Mom and Dad.