More Care for Nick Ward, Motor Neuron Disease
Funds needed now for night nurses, respite care, and family support.Auckland
It’s been four years since Nick Ward first learned about having Motor Neuron Disease (MND) and he is now in the last stages of the disease’s progression.
While the muscles around his eyes are able to be controlled, the rest of his body -- legs, arms, neck, hands, and even his mouth – must be manipulated by another person. Nick has required around-the-clock care for several months, including throughout the night, as his ability to swallow requires the suction of saliva regularly.
Thank goodness for those eye muscles! With them he is able to wink ‘yes’ or ‘no’ and is able to spell out words by selecting one letter at a time from a prompting carer holding a tablet. Nick winks when the right letter or phrase is spoken. Family members report that he unfailingly begins each request with ‘Please’. That’s impressive when you consider the amount of effort required for expressing gratitude!
A more advanced communication system is being set-up, but the engines of the public healthcare system can run slow.
For those of us that have known Nick for many years, it’s not his body’s deterioration that is so hard for us to understand, but the fact that MND does not change the Nick we used to know; his thoughts, humour, musical interests, insights, and observations about the world around him are still there, they are just very hard these days to share with others.
And so, we reach out to you to support the indefatigable Sophia and Nick’s whanau, who share the responsibility of looking after Nick’s every need.
Since Nick and Sophia stand firm in his remaining at home with their two children, the family receives over 40 funded hours per week of professional care at home. But there are another 120 hours in the rest of the week that Nick relies on his family to care for him.
We want to help ease their burden by bringing in more private carers, night nurses, and other supportive measures such as nourishing meals and respite care. In late 2018, together we raised $48K (on this Givealittle page https://givealittle.co.nz/cause/motor-neuron-disease) over several months which went to the family's mounting expenses and private care. At $800-900/week, this care is costly and we need to replenish these funds.
All funds raised go into an account that is managed by Nick’s uncle, Martin Ward, and myself, Lana Hart, with a bank account that Sophia and Nick can view at any time.
Your donation will go a long way at ensuring Nick, Sophia, their kids, and wider family can lead a quality life together in the final stages of the disease. Please give generously if you can.
Thank you for your support!
Lana Hart & Martin Ward's involvement (page creator)
As a long-time friend of Nick and Sophia, I have raised funds for the family since late 2018. Martin Ward, Nick's uncle, and I together manage an account that pays for weekly night nurses to supplement public care provided.
Use of funds
Costs of a night nurse two nights per week is $800-900/week, plus a further $300-500/week for carers to supplement the publicly-funded care already provided so that Sophia can have family time. All unused funds for care will transfer to the Duncan-Wards.
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Things have been going really well with two new private caregivers being trained up to give me some more time to spend with the kids and to be with Nick as his wife instead of being his caregiver.
Thanks to family members Colin and Martin and the great new caregivers I was able to go away for a few days and recharge my batteries and relax knowing that Nick was being really well looked after.
We have had some proud parent moments recently with Amelia reaching the finals of the school speech competition and being the only year 7 to be highly commended and Andrew starting back at athletics and getting 1st and 2nds in his races. I was able to go to see him run and take video for Nick because of the great new private caregivers.
Thank you so much to everyone for your generous contributions, affording us the chance to see our kids in action.
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This page was created on 13 Sep 2019 and closes on 11 Dec 2019.