Help Hemi move into a wonderful care home. (Photo credit Rebecca Mauger)

Hemi was a talented full-time painter and decorator, a beach lover, swimmer, and fisherman. He could put down a Hangi with the best of them and loved nothing more than being an active dad to his three children. He’s still all of those things but now they mostly just exist as memories. In 2010 Hemi was diagnosed with a rare and incurable progressive neurodegenerative disease called SCA1 (Spinocerebellar Ataxia Type 1). He worked as much as he could and continued to be an amazing husband and father but three years ago the illness really started to take hold. Hemi is now in a power chair. He can’t make his own food, drive, walk, or shower unaided. It’s hard to understand his speech and all fine motor skills are compromised. We can no longer manage at home. A permanent hospital level care room has become available at Summerset in Katikati, an aged care facility. At 51 it’s not really where we pictured him being but there really aren’t any places for under 65s in his situation to go. Hemi is happy to make this move as he has spent time in respite care for short stays at another aged care facility in Tauranga during this last year. We are grateful to the Ministry of Health as they will fund most of the weekly cost. However, we need to find an extra $280 every week which we can’t access through other Government avenues like WINZ. This is the only room available in the Bay of Plenty and Hemi will have the comfort of his own toilet and bathroom. I still have to support him financially as we are married, making him ineligible for any benefit unless I stopped working. However, that would not leave enough money to cover our rent and basic expenses. This is on top of losing other services such as physio care that are no longer funded once you move into a care facility.

Above all I want him to live with dignity and to enjoy the time he has. Right now this move will give him the best chance of that. Any support you can give will contribute directly to covering this shortfall in costs and will make such a difference to this always cheerful, optimistic, and brave man.