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Spinal Muscular Atrophy (SMA) is, in basic terms, a neuromuscular condition causing weakness of the muscles. This is purely a physical disability there is no mental impairment.
SMA is the biggest genetic killer of children under the age of 2 years
1 in 40 of you carry the gene that passes this conditon on but the majority of you wil be unaware of this.
There is no current cure.

SMA type 1 is life threatening with most children dying within the first  2 years of life.

SMA type 2 is life limiting but survival into adult hood is possible.

SMA type 3 is not life life threatening of life limiting however the muscles are greatly weakened and the use of them limited.

there is also Adult Onset SMA where the degree in weakness is variable.

you can find out more about The Jennifer Trust and SMA here :~ http://www.jtsma.org.uk/

My daughter Kimberley has SMA type 3 and walks with the aid of a Kaye Walker with a wheelchair used for journeys out, but the condition does vary from child to child.  Kimberley gets very frustrated that she can't run around with her friends and this is quite upsetting, but we do lead an active life with swimming top priority - she is no different to anyone else in the water as the water holds her up so there is no need for aids and she swims like a fish.  We go swimming at least 3 times a week so we should be super fit - but i'm not as i do pretend swimming not actual swimming swimming - pretend swimming is where you splash around in the water while you watch your kids swim.  

I have commited  myself to take part in the 5K (circa 3 miles) Santa Run at Greenwich Park London on Sunday 7th December 2008,  to raise money for the Jennifer Trust - the charity which supports people with SMA in the UK.

I think its a coincidence that commited is also used for insane people,  i have not run anywhere for a very long time ... well, since i started driving actually and before that i walked (nearly) everywhere because i was to tight (and poor)  to pay for taxis. I say nearly everywhere because i didn't walk the 8 miles into work everyday and then the 8 miles home - I caught the train. Looking at Greenwich Park on  google maps it seems much large then 5K and i am beginning to wonder why i am doing it, i think it must be because i want to dress up as Santa and run around outdoors without everyone saying there goes that crazy person again! note to self must purchse trainers, Santa outfit i have already! (13.10.08)

So trainers purchased - rather fetching orange and white  - Santa costume has been brought out of the wardrobe, now training must begin in earnest as there is hardly anytime left so i really dont look crazy i'm not training in my Santa gear and will take along my sisters dog.(20.10.08)

(26.10.08) Training Begins - So we went swimming yesterday and I did some real swimming not just pretend swimming, I swam a whole 8 lengths - 200 metres and OMgosh did my legs ache afterwards and thats not  all ...  today ... in the rain ... i took my sisters dog along for the run around the union* in my home town (thats commitment for you) - and i did actually run and now my legs ache even more so and weirdly enough so do my shoulders - probably where the dog was pulling me along at the end I think. *The union is a place where people of the parish can graze their animals at will for free - these days the people of my parish do not have many animals they need to graze so it is used for walking dogs and playing truant from school. 

(02.11.08) Not long, now just a month away, but training is on hold because i have a cold - i have to emphasise this is not the flu but it is a man cold much worse than a normal cold - i have been training in the week previous though both last Tuesday (with the dog) and Wednesday (without the dog)  were given over to training and i am aiming to be better by Wednesday this week at the latest to carry on. 

(12.11.08) So last week no training took place, which is really quite bad, it did however feel like i had been training on the Thursday as Wednesday night i went to see the bonfire celebrations in Lewes, Sussex and because of parking problems i parked at one end of town and walked to the other with my daughter in her wheelchair - all up hill - and then after the prosession i walked back to the fire site, decided it was too wet - the heavens had opened - and then back to my car, which was downhill, but i had to lean backwards to stop the wheelchair running away and my thighs ached the next morning! Last night however i did go swimming with the children and we did some real swimming albeit slower than usual we - thats me and Kim - did 6 (25metre) lengths in 15 minutes, my son did a lot more.  

(18.11.08) On Friday past  decided that i was going to bake cakes for everyone for Christmas, these are much more personalised presents and are meant to help with cost, however they only help with reducing the cost of you have all the ingredients in your store cupboards - i don't - anyway so i went out and brought all the ingredients and then did a practice run through on Friday i made a Parsnip and Coconut cake and whilst i was i the mood decided to make Mince Pies and a Victoria Sponge! whilst they were baking I went for a run or a walk to the field which i was going to run around and a walk up the hilly bits and run down - i felt just ever so slightly knackered afterwards. The idea was to do one of these runs every other day but It didn't happen Sunday or on Monday, I did on Monday though walk the mile or so into town from my house as my car was in for MOT

(25.11.08) went for a run Saturday 10 minutes was exhasuted at the end, was 800 metres at least and most of it was uphill - said i wanted to do this 10 mintue run everyday now in training up to the 7th December after all its less than two weeks away, but Sunday it was raining hard and i didn't go, however i did get the step out of the cupboard under the stairs and had a good run on there - 62 in 60 seconds thats both feet, i don't know about a support bra i think i need some support pants to stop my bum from wobbling- working out the math in need to do 5000 steps or thereabouts as each step you equates to one yard i.e. 3ft and one metre = 3ft 3" so i did 62 or 124 in 60 seconds at this rate how long will it take me to do the run? I can walk a mile easily in 15-20 mintues so i am hoping the run will be less than an hour, I receievd in the post my number 2439 on Saturday along with final instructions we have to be there 10:30am at the latest for a warm up and the run to begin at 11am - an early train then -  but it said if you expect to run in less than 30 minutes please make your way to the front, to be near the start line - 3 miles in 30 minutes Omgosh i need roller skates i think.

I have to update my total as i have more sponsorship from my Sister and Dads workplaces but i do not know the amount   so at the moment we are stuck on this figure.

(10.12.08) Woo Hoo Run Completed in approximately 45 minutes  on the day i left early as i was catching the train up to Greenwich (i don't live in London) and arrived there at 10 o'clock, made my way to the start point where we were given the Sanata Suit, so i didn';t have to wear my Ann Sumemrs one although some people were, i put this Santa Suit on over my clothes as i was cold - it was cold, but a nice sunny day. and my number was pinned to my back, then there was a group warm up  - I have photos. The run was due to start at 11 but didn't there was a fair few number of Santas running however once the run got underway i jogged along the side, as i find i'm much better at running on grass than on concrete, i did fairly well and ran most of the way only walking uphill and a few flat bits to catch my breath. twice we got close to the finsih line and we thought this is it, we are quicker than we thought but then the route verred off in a different direction i think the organisers did that to tease us, I was exhilarated but warn out when i crossed the finsih line, we were given goodie bag which contained some fruit snacks and a energy drink (caffiene free)  and we got to keep the santa suit. When i took my suit off i had the red fluff all over my black trousers but i didnt have the energy to brush it off so i left it, i must have looked quite strange onthe trian home, and the stations well they have so many stairs up and down them to change platforms that was a real killer. But i had fun and i made money for charity so great, already thinking up ideas for next year.

(07.01.09) still desperatley trying to collect all the money pledged (left it for a couple of weeks over Christmas) but if i do manage to collect every last penny the total raised will be £544.00 well over anything i hoped or ever dreamed of acheiving so a BIG THANK YOU everyone who supported me.

I have not set a target because i want people to decide for theirselves whether to sponsor me or not and how much to give. Donating through Justgiving is quick, easy and totally secure. It’s also the most efficient way to sponsor me: Jennifer Trust for SMA gets your money faster and, if you’re a UK taxpayer, Justgiving makes sure 25% in Gift Aid, plus a 3% supplement, are added to your donation.

So please sponsor me now!