Helping Hollie!
Wow what a day, due to the amount of support we have received from this incredible community we have been able to donate $20,000 to such an amazing family. Thank you all so much for making this dream a reality. It was lovely to be able to personally present the cheque to Hollie, Amanda (mother) and Maddie (sister), unfortunately Craig (dad) was unable to make it due to work commitments. I first met Amanda and Hollie in Karratha last year and their positivity and approach to dealing with the challenges they are facing was astonishing. This money will assist with a myriad of issues they are facing such as relocation for increased support, gene therapy in the USA and creating as many precious memories with Hollie as they can. Below is Hollie’s story written by mum Amanda.
On the 9th April 2021 after a long almost 3 month wait for genetic test results (and more than 18 months searching for answers) our whole world was turned upside down and worst nightmare realised when our precious then 6 year old Hollie was diagnosed with a very rare neurodegenerative condition called CLN5 Batten Disease, also known as neuronal ceroid lipofuscinosis, or ceroid lipofuscinosis, neuronal. It is a form of childhood dementia.
At present there is no cure and life expectancy is late childhood to mid-late teens, therefore right now is the time to make amazing memories as a family while Hollie is still able to physically participate and enjoy them like a ‘normal’ kid as best she can. Over the last 18 months we have seen a sudden change in Hollie’s condition where she has gone from walking, talking, learning like her peers, to now needing a walking frame or wheelchair, a large loss in speech ability, and in general her cognition has declined dramatically.
One thing this journey has taught us is many things we once thought were important in life, are not so important. What truly matters is making amazing memories as a family.
For anyone who would like to follow Hollie’s journey we have a private facebook group called HOPE FOR HOLLIE which you can request to follow.
If you would like to donate so we can continue on our mission please donate here.
