Motor Neuron Disease - Keeping Nick Going

***Update - 26 September 2019***

In under a year, together we've raised over $48K for Nick, Sophia, and their family for the ever-increasing costs of the care they need. Thank you so much to all our generous donors. These funds have gone to the family's expenses, private carers, equipment, and other costs associated with Nick's disease.

Nick is no longer able to easily access the page or the funds, so we are moving it to a new Give-a-Little page for the next fundraising drive, so that other family and friends can help manage things.

Please visit, donate, and share https://givealittle.co.nz/cause/more-care-for-nick-ward-motor-neuron-disease

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NEW EQUIPMENT TO KEEP NICK GOING in March 2019

We all gave a lot on this give-a-little page late last year. Since then, there are a couple of other needs that have come up which would help out Nick as Motor Neuron Disease progresses.

If this is your first time to this page, scroll down and read Nick's story and his words of thanks.

Nick needs to use his ventilator mask, which helps him breathe, not only through the night but increasingly during daytime as well, especially after periods of talking. If he leaves home, he can't take the ventilator with him unless there is a battery pack. This makes longer outings, like medical appointments and movies, distressing and uncomfortable.

All methods of communication and entertainment, including Nick's email, text, tv, computer, and dvds, are going through his big screen in their lounge. A universal remote to control all of these, instead of asking others to change the remote for him, would make life a bit easier.

A battery pack for his ventilator and a universal remote adapted to his use will cost around $1000. Let's raise this amount to show Nick how much we understand that it's these little things that can make a big difference to his days.

Thanks so much for making a donation to Nick's page.

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Nick wrote this note on 14 Nov 18:

Over recent days I’d been thinking about what to say by way of thanks. And when I sat down to write it, it all evaporated into thin air…typical!

The response to this initiative has been so tremendously positive, I felt quite overwhelmed by it, immensely grateful too but still overwhelmed. I think Sophia felt the same.

Nevertheless during the course of this illness, I’ve come to learn the importance of acceptance. Accepting change, accepting others as they are and accepting myself for who I am. So in the spirit of acceptance, I want to say a heartfelt thank you to you all for your unabashed generosity. We feel very blessed.

And specifically a massive thank you to my wonderful extended family including all my treasured friends - old (who in some cases have been in my life for over 40 years) and new and to those of you that I haven’t seen in years but have answered the call anyway. And of course the unknown or anonymous donors, what a wonderful phenomenon you are.

You’re all top notch, best in show, premium quality people – thank you for being you.

Love Nick

Follow Nick's journey on https://www.caringbridge.org/visit/drawsalohcin

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Nick Ward, age 50, is in his final stages of Motor Neuron Disease, a neurological disorder that progressively affects the cells that control the muscles of the body.

Nick is now immobile, and operates his electric wheelchair with a finger on one hand that is not yet fully paralysed. He requires 24/7 care and is beginning to lose his ability to speak because of decreased respiratory function.

For those of us who have known Nick for a long time, we can see that this terrible disease has not affected his insights, cognition, sense of humour, or wit. Remarkably, he remains buoyant and spirited, and can throw in a sly remark or encouraging insight with surprising frequency. A recent comment was that “the reality of my disease is that I have become very focused on my immediate care.”

Unfortunately, his immediate care needs have increased substantially in a short period of time, requiring more hours of one-to-one professional caregiving. This is important to Nick and his incredible wife Sophia, who works tirelessly for her family and is responsible for the bulk of Nick’s daily care, as well as working three days a week to support the family. With their two children, ages 8 and 11, they now require significantly more professional support than the publicly-funded nursing, respite, and disability care can provide.

Your donations will be used for the direct payment of the following resources:

• Supplementing funded daily care to increase the number of hours that professional care is provided in the home. This will enable Sophia and the kids to enjoy quality time with Nick rather than providing solely everyday, practical care,

• Alternative care and treatments to bring increased comfort and support to the family, including counselling, and

• Respite care through the employment of professional caregivers at home, so that Sophia can have a break.

Together, we can bring an increased quality of life for this amazing family who have endured the very worst of health conditions, and now have a limited period of time to make the most out of an awful situation.

Please give generously to help Nick, Sophia and their kids to enjoy these next few months in the best possible way. Ngā mihi nui.