Family says farewell to Hemi
Long battle with rare disorder over for Hemi Whyte
When the Katikati Advertiser first met Hemi Whyte, he was powerchairing his way to the water at Waih¯ı Beach on the beach access mats with his arms outstretched — revelling in being so close to the ocean.
His family said a final goodbye to him last week.
It’s been a journey for the Whyte family for the last decade.
“We really thought we had more time with him,” says wife Jacqui.
“But five weeks ago his SCA1 ramped up and he really started declining most unexpectedly.”
Hemi, 53, had spinocerebellar ataxia type 1 (SCA1), a rare disorder similar to Huntington’s disease.
Hemi’s diagnosis put a stop to his work as a painter and decorator, to fishing, boogie boarding, swimming and being an active dad with his children Marama, Noah and Leo.
He was no longer able to walk or drive and used a power chair.
But Hemi had a dedicated group of supporters to help fund his needs. The Hemi Whyte Cup “mates helping mates” was a group created by Mark Gardiner.
They got together to fundraise for Hemi every year, and this included raising the money for a mobility van so the family could still visit his favourite spots, like the beach.
Hemi and wife Jacqui were among the instigators of the Waih¯ı Beach access mat project, with a social media post voicing their sadness at not being able to visit the beach.
A few years later, the two hit the Katikati Advertiser front page again when Hemi became the youngest resident of Summerset by the Sea in Katikati.
He was unable to receive a benefit because Jacqui worked.
He required specialist and hospital care in his last years but they discovered there was nowhere in New Zealand for people under 65 needing hospital-level care — aside from aged care facilities.
Jacqui made it her mission to fight for him and other families for such a facility for young people with chronic illnesses.
She says she’ll continue to fight for a facility so other families don’t have to suffer the trauma of what they all went through.
In the last five weeks of his life Hemi returned home, where friends and family rallied around taking shifts to care for him as well as bringing groceries, cleaning, gardening, providing hugs and comfort “and looking after him with just incredible care and dedication that words can not describe”, Jacqui says.
“There is not enough praise and thanks that I could say to you all for this.
“The Eagles were playing Take it Easy when you left us, so take it easy my beautiful man you can finally rest.”