New stretch target
I simply cannot believe that 98 wonderful people have pledged and I have now reached my target with 10 days to spare. The embarrassing/awkward thing is that my friend and I have already organized a quiz night at the Slug & Lettuce in St. Albans next week so any money raised will be extras. We have gone to a lot of effort getting a whole load of raffle prizes plus sponsorship so can’t really cancel the event. I have decided that any additional money raised on here or on Thursday 16th April will go towards another expensive piece of equipment I need; a hearing aid.
“They don’t cost that much and surely the NHS can supply them!?” I hear you cry. However, I like to be different so do not suffer from regular hearing problems. In fact my ability to hear faint sounds is normal and a traditional hearing aid that amplifies noises would not benefit me. I need a ‘FM hearing system’, which hones in on people’s voices, with a little microphone that sends signals to an earpiece that I wear. I have used the system before when I trialled it for the University of Manchester last year so know that it works for me but it unfortunately costs £1300 (everything is ridiculously priced when it comes to disability).
I’m not suggesting that I will reach the stretch target in 10 days but just pointing out that any money made from hear (get it?) on in will go towards the FM System.
Who am I?
My real name is Glen Shorey (better known as 'Wheelchair Boy' because of my blog) and I am 21 years young. I suffer from Friedreich's Ataxia, which is a gradual disease that damages the nervous system and affects physical movements. Don't worry if you haven't heard of it because it's not that common and doesn't get much attention. It affects 1 in 50,000 worldwide so I guess I drew the short straw (or I was a sinner in my past life as Glenn Hoddle believes). Either way, it basically means that I am in a wheelchair full time, have metal rods in my back and have heart isuues. It also affects my sight and hearing but they pale into insignificance compared to the other problems.
Why am I collecting money?
Unfortunately, my condition has deteriorated in recent months meaning that standing transfers have become extrremely difficult and highly dangerous. I used to get in and out of my Kia Venga fine but I'm begining to collapse onto the floor on a regular basis and I need a new system to get in my car safely. Luckily, I haven't hurt myself but I feel it will be only be a matter of time so the Carony Classic cannot come quick enough; hence why I am on here begging for donations.
What's a Carony Classic?
Basiclcally, it's a car seat that slides out onto a wheel base so that no transfer is necessary. It comes with either 12" or 24" wheels. I have chosen the 24" model so that I can maintain the little bit of independence I still have and be able to push myself, even if it is only a little distance.
What's up with the current seat?
At the moment, I have a car seat that turns out. I then hold onto the car door, stand up (becoming increasingly difficult) and transfer into my wheelchair. Having a Carony Classic would make my life (and that of my carers) so much easier as it would commpletely eradicate the chance of me falling.
Surely it doesn't cost that much?
It does! When it comes to disability, everything seems to cost that little bit more. I'll break it down if you don't believe me:
The supply and fit of 24in Wheelchair Base- £2480.00
Rails/sliders to be fitted in the car- £280.00
Handles so that carer can push- £320.00
The Carony Classic will mean that I can stay in the front next to the driver rather than being stuck in the back of a van, unable to hear and participate in conversations.
That means the total is only £3080.00, which is considerably less than my target figure.
However, I will be stuck in the chair for most of the day so had to consider comfort. The standard chair becomes uncomfortable if you are in it for longer than an hour so I will need a bespoke with all the correct back/kidney support.The Daytona Jensen sports seat is priced as follows:
Seat with upgraded Jensen low base- £429.00
Upgrade to split vinyl/fabric mix- £50.00
Dual arm rest-£175.00
The seat is the same model used in the dugouts at the Emirates Stadium but don't worry, mine won't be red or have the Arsenal badge on so you won't be donating towards a football chair.
It makes the overall total for the whole system £3734.00
Why should we donate?
If you need extra incentive than merely helping 'Wheelchair Boy', I will offer rewards which will be updated regularly.
How do I find out more?
Fo further info or additional photos, please read: http://theadventuresofwheelchairboy.blogspot.co.uk/2015/03/new-car-seat.html or send me your questions.