Unfortunately this is an incurable and progressive condition, which has presented many challenges for us.
Nick can no longer talk, he has issues swallowing and has a PEG feeding tube fitted to ensure he gets enough hydration and nutrition.
He has very limited movement of his right arm and hand, he uses a hoist for all transfers.
Our main goal is to keep Nick at home, so we can all stay together as a family,
Unfortunately Nick doesn't have access to a shower as it's upstairs, so we go to the local sports complex for hydrotherapy regularly as Nick can use their shower facilities as well as enjoy being in the water.
We need to convert our WC and pantry into a wet room.
We are trying to get a device which Nick controls with his eyes, which then communicates for him, this has been trialled successfully and alows his thoughts to become verbalized.
Nicks wheelchair doesn't have the lateral supports he needs so this is another incredibly expensive piece of equipment that we need to purchase.
Due to the level of support I need to provide neither of us are working as I am the full time carer.
Since Nick was on Chanel 7 News many people have reached out to us and asked if they can help by making a financial donation, whilst initially we were resistant to accepting these offers, we have realised that with so many things we need to make it possible for Nick to stay at home we would be making the last moments we have together harder then they maybe need to be.
So if you are in a position to be able to make a contrubution we would be most grateful.
Thank you for reading,
Nick Jenn and our lovely Son
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