Monday, 27 September 2010

WHEELS

This is the 'Tom stroller' we were offered. EW- NO THANKS!!!

This is the far more attractive and appealling 'snappi', that was the alternative. Not bad, except; it doesn't have a parent facing option, which when you consider the amount of time Hope spends on her way to and from appointments and therapies, but more importantly; the fact Hope is an epileptic and I NEED to be able to see her.

To cut a VERY long story about a meeting with wheelchair services and with support from Hope's lead professional, a  happy compromise was found (or so we thought at the time)...........


Here is Hope  on her way home from hydrotherapy in her ADAPTED
 snappi (now parent facing). HOWEVER, this picture is the one and only time Hope has used it!

This is why it's no good!!!
1- It doesn't have a basket-though on this count we are lucky to not have
a basket, as you only get a basket if you have an oxygen unit or suction equipment.

2- Now it is rearward facing, the raincover doesn't fit! and there are none that do. Which in the UK is never gonna work!
3- No hood to protect her from the wind and sun (if there ever is any :O)  )
4- BOLT CITY!!! This pushchair was manufactured to be forward facing, therefore, the back of it, which is now the first thing you see (but normally hidden), is metal and big bolts - EW

I've been in touch with wheelchair services and tendercare about these issues, each seem to think it's the others problem- none offering any solutions, so when I get the opportunity, it will be returned to wheelchair services- it might well suit another child .

So here is my solution...I've searched high and low, though to be fair, there isn't a massive market, and they are all ASTRONOMICAL in price, but this, meets Hope's and my needs.....

THE SHUTTLE SYSTEM

The Moon buggy
Not only is it quite nice looking,(as far as these things go),it can be forward or parent facing, it has a hood, raincover and basket, it's lighter, suitable til age 6 ( though i suspect it'll last longer since she's on the smaller side).

Plus with alternative bases options available, it also fills Hope's needs for a comforable chair for her to relax in...
The moon rock (excuse the sideways pic)


THE DOWNSIDE.........................
£2,775!!!!!!!

Hence the half marathon, which is probably going to be the first of a few fundraisers. But, she deserves the best, and it'll be worth the hard work!

So any donations/sponsors, big or small, will be very gratefully recieved.
Donations can be made through paypal.co.uk  account : runningforhope@yahoo.co.uk

Thank you very much

Xxx

Tuesday, 14 September 2010

runningforhope

In May, myself and Hope's godmother Mary, joined a running club (Swindon Harriers), at this time, we were in the beginners groups, ands started out jogging for one minute, then walking for one, jogging for one and so on. We progressed fairly quickly in the next couple of weeks , then set our sights high. In hindsight, very high. It was when we could run about 2 miles without stopping, that we decided to join another running group (Shin splints), in preparation for the half marathon. We said that's what we'd aim for, but at the time it seemed a very very long way off. Well, 2 months or so have passed, and we are now running distances that we've never even walked. Im upto 10 miles and Mary 12 (I missed last week as Chris was working). Apparently, according to more seasoned runners that ourselves; if you can run 10 miles, you can run 13.1.

So, we've done it! And of course, it's always been in  our minds that we'd do it for a good cause. Well, charity begins at home. Right? Hope inspires me daily, and on those long runs, when one could so easily give in and walk, it's her smiley face that spurs me on. I do all that I can to make her life, the best it can be. She's happy, so I guess I'm doing something right. However, I feel like, there are things that would make her life even more comfortable, for instance, a chair to sit in- not much to ask right, but when you reach a certain size, baby bouncer chairs are no good, and when you don't have much control over your muscles, you can't just sit on the sofa. So you are held all the time, or you lay on the floor- which you enjoy, but , it would be  nice to have a suitable chair.
Then there's the wheels... She's getting to the size and age where she fills her pushchair. We have been supplied with a 'special' pushchair, but this is unused in our cupboard under the stairs as it does not meet her needs (this is another story, but I'll fill you in another time). Unfortunately, with disabled equipment, there isn't a huge market to choose from, and basically, anything that's been made for disabled people, is ridiculously priced. You could quite literally, take the price of a normal item, than add a couple of zeros to convert it.

Then there's the thepary. The brainwave therapy seems to be paying off well. We paid just under £700 for the initial assessment and therapy, and are due back for reassesment next month. Thanks to family and friends doing some carbooting, we have the next visit funded. Ideally though, we'll go 4 times a year.
And I suppose, there are other therapies that I'd like to try if money were not an issue.

So here begins my fundraising. The half marathon, is on the 10th October. Please sponsor myself or Mary through paypal address runningforhope.yahoo.co.uk
Any amount will be very gratefully recieved

Thank you

Xxx