Help Us Give Maryanne Her Voice Back!
You might not know Maryanne and Peter, or you might be their family or friends! Either way - once more - we need your help to help us help them.
Some background info for those unfamiliar with Maryanne and Peter's journey so far...
After numerous non-conclusive doctor's visits, Maryanne was diagnosed with Motor Neuron Disease, a rare and progressive illness that causes the nerves in the spine and brain to lose function over time. Motor neurons are nerve cells that send electrical output signals to the muscles, affecting the muscles' ability to function - impacting for example, walking, breathing, swallowing, and more recently for Maryanne specifically - speaking and communication.
In 2019, together with the support of her husband Peter and their family, Maryanne took to her new way of navigating her world in a wheelchair like a Warrior Queen. By the start of 2020, navigating the bathroom with a wheelchair was a critical challenge, one which we are incredibly grateful to have solved through the help of generous and kind-hearted souls.
Now, we face a new and pressing challenge. With your help, we can drastically improve the quality of Maryanne's life.
Maryanne now struggles to speak, and she and her family are quickly losing the ability to communicate with each other.
One of the biggest challenges of Motor Neuron Disease is that over time, various functions of the body are affected. This makes it all that much harder to keep a sense of autonomy as a person with MND.
In Maryanne's case, speaking has become increasingly difficult over the last year. Maryanne now also wears a neck brace which has an additional impact on her speech. It breaks our hearts that soon, she will no longer be able to communicate her needs or participate in some of the things people often value the most. Being able to talk with friends and family, reading, checking her messages, asking for help moving her arm if uncomfortable, and even simply asking for some water is quickly becoming less possible.
There is, however, a way that we can improve Maryanne's quality of life, offering her a way to communicate clearly with family, friends and carers, and a way of retaining some form autonomy and activities that will keep her interest - especially when she is no longer able to knit. (Those of you who know her will know how she will miss that!).
The gear that can give Maryanne her Voice back.
There's a simple way that we can improve Maryanne's quality of life. A piece of equipment called an Eye Tracker can give her a "voice" - and we are lucky enough to have found someone selling one 2nd hand in Plett, a stone's throw away from where the family live in George.
Eye tracking devices have a fair number of uses, but the high-end models greatly help improve the lives of individuals with disabilities by enabling them to communicate, control their environment and gain greater independence through their eyes. With an eye tracking device, Maryanne will be able to control another device (e.g. a phone or tablet) using just her eyes (instead of a mouse, finger, touchpad, etc.). This device is even able to speak for her! You can read more about them here and here.
The estimated cost for a Tobii Eye Tracker new is well above R100,000.00, and through the 2nd hand option, R25,000.00 - before added costs of training, etc. Although a whole lot less, this 2nd hand option is not something that Maryanne and Peter or their kids can afford. And so, after the incredible support we had making Maryanne's bathroom wheelchair-accessible, we're once more reaching out to you for help!
We initially started with a target of R25,000.00 but since then have learnt about additional costs (training, etc.) related to the eye tracker. With reaching 80% of our initial target in less than 24 hours - thanks to the remarkable outpouring of love and support - we then updated our target to R35,000.00 to cover these related costs. Once more, we were blown away by the support as we neared this new target in less than yet another 24 hours. With the phenomenal support we have received, we are now able to give Maryanne her voice back! It looks like the wonderful community of support around us is still donating even though the target has been reached, so we are keeping this fundraising page open for a while longer as a fund to support Maryanne and the Mason family. Please see the 'Updates' tab to see more details regarding this.
Any donation will help, no matter how big or small. Please help us meet Maryanne's ever-evolving needs and spread the word so that we can harness the power of many hands and spreading the load.
How to donate:
- Simply click on the 'Donate Now' button
- Enter any amount you want to contribute in the donation box that appears and click the 'Checkout' button.
- You'll then be directed to select your payment method (Card, Snapscan , Virgin Money Spot, or Instant EFT) and will be asked to fill in a few details (name, surname, email and phone - these details are only seen by us and we'll only use them to thank you for your support). When you're done, click the 'Complete Order' button and that's it!
If you have any issues with making payment, please contact the Quicket Support team who will be able to assist you by emailing [email protected] or calling them on 021 424 9308.
Why we're using Quicket: Not only does it make it easy for us to gather donations from people near and far, but it's also significantly cheaper than traditional crowdfunding websites and works out the cheapest for us.
Even if you don't have a card that works for online payments, anyone with a bank account is able to donate online using the Instant EFT. payment method. That said, if you're really unable to donate online, please get in touch with Nina by emailing [email protected] to arrange an EFT donation.
Thank you, thank you, THANK YOU.
It looks like the wonderful community of support around us is still donating even though the target has been reached. We know for a fact that there will be more costs down the line, so this additional support is so welcome and appreciated, despite the fact that all immediate needs are currently met. We'll keep this fundraising page open for a while longer as a fund to support Maryanne and the Mason family.
Thank you for helping us give Maryanne her voice back! For those that donated, we'll send you updates as we get Maryanne set up as a high-tech lady. If you'd like to receive these updates and did not donate through Quicket, you can click here to join the mailing list.
As mentioned in our last update, we opted to continue our fundraising efforts in order to make the option of an additional night/weekend carer possible. Only moments after posting this update, an incredibly generous anonymous donor reached out to us and offered to fund this ongoing cost. And now, the search for the best option for care for Maryanne begins.
So far, we have approached what's needed as it comes and have reached out for support when needed. This offer of continuous support together with all the incredible help with sharing and donations from near and far over the last two days, means that currently, we have everything we need to ensure Maryanne is comfortable and cared for - and - as we set out to achieve when launching this fundraiser, will soon be able to communicate clearly with those around her.
Although we do not know what challenges we will face next or when, and we are doing everything we can to be prepared, for now, we've reduced our target back to R35,000.00. We are at 96% of this goal, with only R1,195.00 to go. Wow.
It doesn't feel possible to say thank you enough. The word simply doesn't feel sufficient! We are all incredibly grateful for your love and support. We feel held and supported knowing you are walking this path together with us.
At 92% of our updated R35,000.00 goal, we are now not only able to cover the cost of the 2nd hand eye tracker, but the hidden costs (configuration, training, etc.) as well! Thank you for making this possible!
As mentioned in our previous update, it is clear that around-the-clock caregiver help is needed for the times when the wonderful Curlone, Maryanne's weekday carer, is not on duty. And so, we are continuing our fundraising efforts to help us kickstart the possibility of a night/weekend carer.
As we are unsure of these costs at this stage, we have added an additional R10,000.00 to our target. This additional amount is unlikely to be sufficient, but every little bit helps us help Maryanne. And so, our new target is R45,000.00, meaning we're sitting at 74% of our total target!
Thank you once more for your continued support. Regardless of whether you've been able to contribute financially or not, please keep helping us by spreading the word far and wide as we continue to make it possible to meet Maryanne's ever-changing needs.
This additional R10,000.00 will cover:
- The service of wiping the eye tracker unit of its previous configuration (it's programmed to an individual person) by the Tobii agent.
- A day of training from the Tobii agent for Maryanne and those around her. Doing this officially through the Tobii agent means we get ongoing support from them.
- A moveable support table unit to hold the computer system that is part of the eye tracker. We can purchase one of these for R15,000.00 but are going to rather build one ourselves.
- We are looking into the possibility of a night nurse to help care for Maryanne. Her current caregiver only works weekdays, and it is clear that around-the-clock help is needed. We are unsure of these costs yet but have added a little to the target to start fundraising for this.
Giving Maryanne her voice back
Eye tracking devices have a fair number of uses - from gaming through to research - but the higher-end models have the ability to greatly help improve the lives of individuals with disabilities. An eye tracker can enable a person with a severe disability to communicate, control their environment and gain greater independence through their eyes. You can read more about them here and here.
With such a device, Maryanne will be able to control another device (e.g. a phone or tablet) using just her eyes (instead of a mouse, finger, touchpad, etc.). It will essentially give her her voice back and allow her to communicate with her carer, family and friends - clearly, with minimal mobility and effort, minimising miscommunication and helping her be significantly more comfortable.
The estimated cost for a Tobii Eye Tracker new is well above R100,000.00, but we are lucky enough to have found someone selling one 2nd hand in Plett - a stone's throw away from where the family live in George. The 2nd hand option costs R25,000.00, and has a fair number of hidden costs we've discovered since launching this fundraiser. Although it still costs a whole lot less than a new option, this is not something that Maryanne and Peter or their kids can afford.
And so, we're reaching out to you. Any donation will help, no matter how big or small.
Please help us meet Maryanne's ever-evolving needs and spread the word so that we can harness the power of many hands and spreading the load.
Your generosity has enabled us to get bathroom renovation plans moving along. Things should be kicking into gear once the builders' holidays end later in January. What an incredible Christmas gift!
With the unbelievable feat of reaching this goal so quickly, we'd like to keep the momentum going and so we've decided to set a second target to raise further funds for Maryanne's comfort and care.
We've started putting together a list of needs and are in the process of getting quotes. So far, this list includes:
- Extensions for Maryanne's wheelchair leg rests, so she can sit comfortably with her feet up which helps with swelling.
- Wheelchair-friendly slippers - these are a very specific type that are non-slip, and easy to put on or take off.
- Wheelchair-friendly shoes.
- Building a ramp from the lounge of Maryanne and Peter's house to the garden, so that they can enjoy the beautiful garden that they've put so much love into together with their pets and with visiting friends and family.
- More clothing options that work comfortably for Maryanne in terms of ease of getting dressed or undressed, for example pants that are comfortable without fiddly zips or buttons which can be worn with tops, or longer tops that can be worn with leggings.
- The toilet en suite to Maryanne and Peter's bathroom needs to be lifted so that she doesn't need to go down the hallway to the (soon-to-be-newly-wheelchair-friendly) bathroom down the hallway at night.
- A chair with armrests for the dining room table, which will currently enable Maryanne to sit at the table out of her wheelchair.
- An electric toothbrush, making it that much easier to brush her teeth herself since she is starting to experience troubles with control of her hands and fingers.
- Fixing the lazy boy armchair in their lounge which is currently broken, giving Maryanne a super comfortable spot to rest and relax in, whether reading a book or with company.
- More frequent cleaning of the house: the family's domestic worker currently comes to clean for them once a week, but twice a week would help significantly with the strain of the increased responsibilities.
- Similarly, a dishwasher is also something they're looking at to help with this.
- Future unknown costs for MRIs, doctor appointments, etc.
- The costs of sessions such as physio, massage, etc. that will help improve how Maryanne feels.
- Part-time carer help to help Maryanne with washing hair, cutting nails, etc. for a few hours a week and to build a relationship that will be needed as her illness progresses.
There are so many costs that we foresee needing to cover and many more we might not even have realised yet, so every bit that we can raise towards Maryanne's care is incredibly impactful. If you're not in a position to donate or have already supported us financially, we'd really appreciate your help in spreading the word further!
Thank you for helping us set Maryanne and Peter up in a way that meets the new needs and challenges they face.
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