"HOPE FOR HOLLIE"

On the 9th April 2021 after a long almost 3 months wait for test results, Craig & Amanda’s whole world was turned upside down and worst nightmare realised, when their precious 6 year old Hollie was diagnosed with a very rare neurodegenerative condition called Battens Disease – CLN5, also known as neuronal ceroid lipofuscinosis, or ceroid lipofuscinosis, neuronal. She is one of 2 kids in Australia with her variant of the condition and less than approximately 80 worldwide. This heartbreaking condition sees children develop normally and then suddenly start to deteriorate and loose functions they once had and will see her seizures increase, motor function loss, childhood dementia and behavioral changes, vision loss along with other challenging symptoms and is a terminal illness, so as a family they have a very long and difficult journey ahead.

At present there is no cure and life expectancy is late childhood or early – mid teens. Going forward into the future there will be a lot of expense, whether that be for medical purposes, loss of income as Hollies care becomes more full time nursing care which will impact Amanda’s ability to work as she does now and Craig having to take time off regularly depending upon Hollies needs; the requirement of a car suitable for wheel chair access, home adjustments not covered by NDIS and so much more, let alone the important opportunities right now to make amazing memories as a family while Hollie is still able to physically participate and enjoy them like a ‘normal’ kid.

There is a gene therapy trial very close to being commenced in early 2022 – It will be the FIRST of its kind in the world for CLN5. Amanda and Craig have been in close contact with trial operators and are likely to travel to the USA early 2022 in hope that Hollie will be accepted into the trial. If this occurs there will be a potential 6 month stay in the USA, where they will be unable to work. However, an initial trip is required to determine if Hollie will be accepted, and while hopeful that Hollie will be chosen for the trial and that it will be successful in either slowing disease progression or best-case scenario stopping progression there is no guarantee.

Although Hollie’s care will change dramatically overtime it is already a massive full time around the clock job to keep her safe, monitor seizures and assist her with all activities of daily living with not a lot of respite. A lot of people have been reaching out wanting to help, near and far which Amanda and Craig are incredibly grateful for as anyone who has lived remotely with no family support close by will understand. A Go Fund Me page was suggested by many as a means of providing help and with a lot of persuasion over many months Amanda & Craig have finally agreed.

For anyone interested in more information go to:

Batten Disease Australia | Support | BDSRA Australia

https://www.livingbatten.com/understanding-batten/understanding-cln5/

Amanda and Craig also have a private Facebook group called HOPE FOR HOLLIE which you can request with them to follow Hollie's journey.

Please also keep in mind that Maddison, Hollie's sister does not know the full extent of what is going on as it is a lot for a recently turned 9-year-old to take on, so age-appropriate answers will be given as she asks questions or changing situations require it. So if reaching out to Amanda and Craig please keep this in mind if Maddi is floating around (or anyone who may pass on information to her).

If you do nothing else today hold your babies close, live in the moment and cherish the small things because you never know when those small things and those precious moments become BIG things and memories you will hold in your heart forever.