Team Toby 2020 - Walking for Wheels
Donation protected
Introducing Toby Joe - he's gonna take on the world.
Our much loved little monkey came into the world a few weeks early back in 2013 and although he a spent a night in the NICU, everything seemed to be fine.
It became apparent however that development milestones were being missed and after dozens of different appointments with a myriad of specialists, Toby was diagnosed with quadriplegic dystonic cerebral palsy when he was 2 years old.
Fast forward to 2019 and although he's a bright and cheeky and otherwise healthy 6 year old, doing well in a mainstream school, Toby requires care 24/7 in order to survive. He cannot sit, stand, get changed or walk by himself, must be hand-fed level 2 foods only and uses an eye-tracking device on his computer to aid communication and complete his schoolwork.
Why we're seeking donations
Toby's greatest desire is for independence to explore the world and so we're delighted that after a long process, we've recently received NDIS approval to get him a self-powered wheelchair. Our challenge however is that we now need to get a new car, one that can support a wheelchair modification, as well as paying for the modification itself.
Whilst we can likely get a lease to fund the car (upwards of $43k), we do not have the funds to cover the $29,990 quote for the mods. We thus welcome any support that our friends and family can provide to help Toby achieve his full potential.
Thank you from Toby :-)
Our first fund-raising event - Walking for Wheels - North Bondi, Sunday January 26th, 2020
We would love to invite all of Toby's family, friends and fantastic fund-raisers to join us at Bondi Beach in Sydney on Australia Day for our Walking for Wheels event. Starting at 7am, we'll be walking from one end of Bondi, to the other, and back, and back again, and back again and so on and so on for 12-hours.
Total distance covered will be around 60kms and we'd love as many people to join us as possible to help raise awareness (and funds of course!) Many folks will likely join the trek for an hour or so and we'll be providing food and drink and copious amounts of energy supplies to everyone who gets involved, culminating with a celebration party at 7pm.
Details and sign-up here: https://www.eventbrite.com.au/e/team-toby-2020-walking-for-wheels-bondi-jan-26th-2020-tickets-85061267541?aff=affiliate1
(FYI - although it should be fine, we're awaiting official approval from Waverley Council to hold this event and will provide updates as we receive them.)
What happens next?
We're expecting delivery of Toby's wheelchair in late January and would love to be able to have the modified Kia Carnival ready to go soon after, so that he can use his new chair at school, the park and wherever else he wants to go.
We will provide regular updates and welcome any ideas you have on other fundraising activities to help us reach our goal.
Thank you for your support and we appreciate any contribution you can make.
Robbie, Linda and Toby
Dec 8th, 2019
"You have brains in your head.
You have feet in your shoes
You can steer yourself
Any direction you choose.
You're on your own. And you know what you know.
And YOU are the guy who'll decide where to go."
- Dr Seuss
NB - in the happy and amazing event that we exceed our goal, any additional funds raised will be used as follows:
- Funding further equipment and therapies that Toby regularly requires but is not covered by the NDIS
- Contributing to the Toby Future Fund - (which we set-up upon learning of his diagnosis to ensure he will have access to funding long after we are gone)
- Paying it forward by supporting the fantastic folks at the Cerebral Palsy Alliance with a donation for kids in need
FAQ
What is cerebral palsy? https://cerebralpalsy.org.au/our-research/about-cerebral-palsy/what-is-cerebral-palsy/
How can I learn more about this or support other kids in need? https://cerebralpalsy.org.au/get-involved/
Doesn't the NDIS cover vehicle modifications?
- They may, however the application process and possible approval can take well over 12-months and we require vehicle access for Toby's self-powered wheelchair ASAP.
Getting fitted for his chair.
Nana: Toby, where are you going to go in your new chair?
Toby: Nana, anywhere I like...
Trying out his first walking frame - still needs a lot more practice before he'll be able to walk independently
Daddy, Toby, Mummy and Aunty Suzy
Hello world!
First day of school - Toby LOVES maths and science and wants to be an X-ray doctor when he grows up :-)
Details on the Kia Carnival - $43k for the car and $29,990 for the modification, without any extras
Our much loved little monkey came into the world a few weeks early back in 2013 and although he a spent a night in the NICU, everything seemed to be fine.
It became apparent however that development milestones were being missed and after dozens of different appointments with a myriad of specialists, Toby was diagnosed with quadriplegic dystonic cerebral palsy when he was 2 years old.
Fast forward to 2019 and although he's a bright and cheeky and otherwise healthy 6 year old, doing well in a mainstream school, Toby requires care 24/7 in order to survive. He cannot sit, stand, get changed or walk by himself, must be hand-fed level 2 foods only and uses an eye-tracking device on his computer to aid communication and complete his schoolwork.
Why we're seeking donations
Toby's greatest desire is for independence to explore the world and so we're delighted that after a long process, we've recently received NDIS approval to get him a self-powered wheelchair. Our challenge however is that we now need to get a new car, one that can support a wheelchair modification, as well as paying for the modification itself.
Whilst we can likely get a lease to fund the car (upwards of $43k), we do not have the funds to cover the $29,990 quote for the mods. We thus welcome any support that our friends and family can provide to help Toby achieve his full potential.
Thank you from Toby :-)
Our first fund-raising event - Walking for Wheels - North Bondi, Sunday January 26th, 2020
We would love to invite all of Toby's family, friends and fantastic fund-raisers to join us at Bondi Beach in Sydney on Australia Day for our Walking for Wheels event. Starting at 7am, we'll be walking from one end of Bondi, to the other, and back, and back again, and back again and so on and so on for 12-hours.
Total distance covered will be around 60kms and we'd love as many people to join us as possible to help raise awareness (and funds of course!) Many folks will likely join the trek for an hour or so and we'll be providing food and drink and copious amounts of energy supplies to everyone who gets involved, culminating with a celebration party at 7pm.
Details and sign-up here: https://www.eventbrite.com.au/e/team-toby-2020-walking-for-wheels-bondi-jan-26th-2020-tickets-85061267541?aff=affiliate1
(FYI - although it should be fine, we're awaiting official approval from Waverley Council to hold this event and will provide updates as we receive them.)
What happens next?
We're expecting delivery of Toby's wheelchair in late January and would love to be able to have the modified Kia Carnival ready to go soon after, so that he can use his new chair at school, the park and wherever else he wants to go.
We will provide regular updates and welcome any ideas you have on other fundraising activities to help us reach our goal.
Thank you for your support and we appreciate any contribution you can make.
Robbie, Linda and Toby
Dec 8th, 2019
"You have brains in your head.
You have feet in your shoes
You can steer yourself
Any direction you choose.
You're on your own. And you know what you know.
And YOU are the guy who'll decide where to go."
- Dr Seuss
NB - in the happy and amazing event that we exceed our goal, any additional funds raised will be used as follows:
- Funding further equipment and therapies that Toby regularly requires but is not covered by the NDIS
- Contributing to the Toby Future Fund - (which we set-up upon learning of his diagnosis to ensure he will have access to funding long after we are gone)
- Paying it forward by supporting the fantastic folks at the Cerebral Palsy Alliance with a donation for kids in need
FAQ
What is cerebral palsy? https://cerebralpalsy.org.au/our-research/about-cerebral-palsy/what-is-cerebral-palsy/
How can I learn more about this or support other kids in need? https://cerebralpalsy.org.au/get-involved/
Doesn't the NDIS cover vehicle modifications?
- They may, however the application process and possible approval can take well over 12-months and we require vehicle access for Toby's self-powered wheelchair ASAP.
Getting fitted for his chair.
Nana: Toby, where are you going to go in your new chair?
Toby: Nana, anywhere I like...
Trying out his first walking frame - still needs a lot more practice before he'll be able to walk independently
Daddy, Toby, Mummy and Aunty Suzy
Hello world!
First day of school - Toby LOVES maths and science and wants to be an X-ray doctor when he grows up :-)
Details on the Kia Carnival - $43k for the car and $29,990 for the modification, without any extras
Organizer
Robbie Upcroft
Organizer