"As one person I cannot change the world, but I can change the world for one person." Paul Spear

Wednesday, 27 February 2013

The £29.24 Challenge


 

 

 

 

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."  


WOW!  

 

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?

 

 To go to The £29.24 Challenge JustGiving Web page follow this link:
 

 
 
 
 

Tuesday, 10 July 2012

The Quadrathlon!!



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:





loch tay





"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 - one year on



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
april '12



















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

Toddling Wheels


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...



Tuesday, 29 November 2011

X-Factor-Tastic!





If you are one of the many (or few!) who don't watch X-Factor...


The X-Factor Finalists, along with JLS and One Direction have covered Rose Royce's Wishing on a Star and the song will raise money for children living with a life shortening disease.  Together For Short Lives and 50 other charities will benefit from the proceeds from the sale of the single .  These charities include Jennifer's Trust which is the only charity in the UK who solely offer services for those with SMA and their families and friends.  Maggie, an Outreach Worker from JTSMA,  was invaluable to us in the early days after Eilidh's diagnosis, providing information and much needed support at a difficult time.


23,500 children and young people in the UK are unlikely to see adulthood; these children, with their families and friends, live with their disease every single day and it not only affects them physically but also mentally and emotionally and can impact on every aspect of family life.  Many, if not all, will need additional support and the charities benefiting from the sale of this single focus on improving quality of life for the families and providing help and support.  These charities enable families affected by life shortening diseases to cope with the everyday.



"Life is precious.  You only get one shot.  You live your life as if it was your last day and basically we try to do that every single day of the year."



So, please, please, please help these children live each day, with the love and support of their families and friends, as it it were their last; buy the single and make a difference today...  Life is so very precious...







More information about the Lloyd Family - as featured on the link above - can be found here.