Tuesday, 5 April 2016
My daughter Eilidh’s independence is central to this post today which is supporting Nick Thomson's 13 to 3 marathon run on Sunday 24th April, the Virgin London Marathon. Nick aims to raise £2000 towards a new 3d powered wheelchair. Our family is only as independent as Eilidh is, only has happy as she is. Her wheelchair allows independence and quality of life for us all.
The Snapdragon is way ahead of what the NHS can provide and other privately funded similar powered wheelchairs, allowing 3d movement but also, more importantly, enabling Eilidh to interact eye to eye with her peers with the ability of the chair to move between a floor position and standing height. The chair empowers Eilidh to be independent and confident so that she can be part of more beyond her immediate family. It is responsive and manoeuvrable, allowing her to explore the world around her.
But this chair comes at a price. £24,113. We have raised this once before – by asking friends and strangers to contribute to a Whizzy Wheels Fund (here on this blog) - for the Snapdragon she got when she was 2 years old, but this chair now needs replacing and we are finding it necessary to approach charities to help raise this total. It is not easy to do this, to ask for help, to ask for money, to admit that we cannot raise this huge total for our daughter, but it is a mammoth task.
Eilidh's independence, however is priceless. How can we put a price on her joy, her quality of life? It's simple, we can't and as a result we need to do what is the best for her and the SnapDragon is the best. Through enabling and empowering Eilidh we too are learning; she teaches us how it is to live with disability. She brings joy and I am hopeful of a bright future, but we need to ask others to help maintain her independence, raising funds towards a new powerchair because we cannot do it alone in the time frame required.
I ask that you consider supporting my daughter Eilidh maintain her independence by donating to Nick's Just Giving page which is supporting the Turbo Trust. The Turbo Trust believes in good mobility for all, regardless of age or ability, and provides grants for disabled people to buy the most versatile powerchairs available.approving a grant towards the total cost of her powered wheelchair. Alternatively you can donate at GoFundMe https://www.gofundme.com/whizzywheelsagain
Wednesday, 27 February 2013
I don't remember much these days but one fact from the Muscular Dystrophy Campaign Conference 2012 has stayed very much in the forefront of my mind; it's amazingly simple:
"If every family affected by muscular dystrophy or a related neuromuscular condition raised £29.24 this year we would meet the fundraising requirement set for Scotland’s contribution to fund our research work and support services."
Isn't that amazing - £29.24 can make a difference to someone living with a neuromuscular disease.
So here I am blogging and begging - I won't jump out of a plane but I will beg, borrow and steal! - for your help, for you to Make Today Count.
I ask you - my family and friends and everyone who loves Eilidh- to donate £2.92, £29.24 or even £292.40(!) to the Muscular Dystrophy Campaign for those living with neuromuscular disease in Scotland.
Family and friends by means of six degrees of separation can you pass this challenge on, sharing on Facebook and Twitter #2924challenge to #maketodaycount?
Will you take up the challenge for Eilidh and for others living with neuromuscular disease?
Tuesday, 10 July 2012
You may already be aware that my family are a bit fruity and very nutty!
Some are sporty and some not so much.
One thing, however is sure, we all look out for each other and would do anything to help another...
Well, almost anything...
James is my (wee) cousin and on Saturday he will embark on a crazy challenge:
"is an exhilarating test of stamina, strength and fitness through some of the most spectacular and historic areas of the Scottish Highlands. You’ll need to be on form – this is a tough event!"
So what does this involve, I hear you ask:
0.8 miles swim across Loch Tay from Ardtalnaig
15 mile run or walk over 7 Munros
7 mile canoe back to Ardtalnaig
34 mile cycle clockwise around Loch Tay
And on to the finish where the clock will stop when a melon is slayed by the sword!
James and Robbie are raising money for the two nominated charities Mercy Corps and Mary's Meals, but also for Whizzy Wheels. As I said, my family are fruit and nuts but they are all heart too and I am touched that the boys are doing this crazy Challenge for Eilidh.
So go on, James and Robbie, do us proud, you maddies!
Wednesday, 11 April 2012
Snappie the Snapdragon came into our lives a little over a year ago; she has not solved all of our problems - far from it! - but, with time, she has brought fun to our family (just as Dan from Dragonmobility promised). Snappie is most definitely a girl: temperamental, bolshie and really quite gallus - perhaps she has inherited this characteristics from her proud owner? Snappie is fast and can turn on a tuppence; she even does wheelspins! She's travelled through parks and fields, seen the sights at museums and now ventures to nursery. She's been clarty, mankie and pretty maukit too. I think that Snappie thrives on thrills and excitement - a bit like Eilidh!
extreme flowery makeover
With Snappie we have come far in the last year from a point of hatred (yes, I would put it that strongly!) to one of acceptance - well kind of! We have said goodbye to the buggy and moved on to independence through the wee Micro first then to Snappie. From her first moves, to becoming more confident, to now playing "tig!" with Niamh, Eilidh is blossoming.
Eilidh loves Snappie - that much is evident as her eyes light up at the mention of heading out with her - and loves the independence that she has gained from having a friend like Snappie. Eilidh's love is contagious, she is teaching us about life with Snappie; she is breaking down walls and leading the way in her own definite and distinguished way.
So once again, thank you to everyone who made this possible through The Whizzy Wheel Fund and thank you to all at Dragonmobility who made and continue to make this possible.
We, as a family, can now look forward to many, many more Snappie adventures.
And here's the latest instalment in the Snappie tale:
Thursday, 5 April 2012
I wrote a letter in January to a man; he is the head of servies at the local wheelchair services and rehabilitation centre. In essence I was asking him to meet Eilidh and help us maintain her independence, but core to this letter was also my want to allow others in a similar situation to gain their whizzy wheels quickly so that they could be as mobile as possible at an early age:
"Eilidh has a neuromuscular condition which does not affect her intellect or her cognition. Eilidh is like many other children with SMA and other neuromuscular conditions and can use equipment that some disabled wheelchair users may not be able to use and at an early age when they would naturally be becoming mobile. Mobility is an extremely important element in not only the physical development of a toddler and child, but also in terms of their language and social development: we strongly believe that Eilidh’s speech and language improved as a result of her becoming independent in her Micro. Early mobility will promote self-exploration, motor learning, visuo-spatial awareness, social development, confidence and cognition. Children with progressive neuromuscular weakness will benefit from energy efficient light weight wheelchairs at an early age and I ask that you consider seeing children diagnosed with spinal muscular atrophy grade 2 or 3 early to enable them to become mobile as early as possible."
The next month I had an appointment with our OT at the centre and head of services joined us, with Eilidh as our smiling mediator:
Almost defensively, I ask "I hope that you don't think that I'm being a bolshy parent?" and what i heard in reply surprised me, "No, I agree with you".
Wow! the head of services agrees!
And so we talked about Eilidh and her experiences with her Panthera Micro - oh, how she rocked that chair! - and now her Bambino. We talked of her Action3 Junior and how it really wasn't suitable for her to use and maintain her independence because it was too heavy and cumbersome. He told me that I had done a good job - too good! - because they would be unable to source a lighter chair for Eilidh, but they could look at the Action3 Junior and see if they could adapt that.
By then the most important part of the conversation was about providing lightweight self-propelling chairs for newly diagnosed SMA children. We talked of the cost of the chair - which he didn't think was unreasonable as it is comparable to the cost of an adult chair - and I suggested perhaps having a bank of them as they could be reconditioned and reused. He agreed but did state that parents are often very reluctant to use reconditioned equipment for their children - surely it would be better to have your child exploring their environment early than worrying about the newness of the equipment? We talked of the small number of children in Scotland with neuromuscular conditions which would mean that the initial outlay for panthera chairs would be costly - but what cost can you put on a child's independence? Not wanting to be beaten by cost, I suggested a Scotland wide bank of chairs and he said that it would be something that the wheelchair services could certainly consider and he would discuss it further with the other centres.
With the adult chat out of the way, Eilidh was able to show off her cheeky, stubborn, independent streak and we all walked out to reception to say our goodbyes...
I might not have realised improved independence for my daughter, but hopefully - fingers and toes crossed - wheelchair services will seriously consider providing newly diagnosed children with lightweight manual chairs to toddle and explore with. I just need to go and chase him now for his written reply...