My story

 

When Ollie reached 1 year old in June 2010 he began to show signs of wanting to walk just like any other child, he had been crawling around no problem and was starting to stand up whilst holding onto furniture and even managed to walk across the living room whilst holding onto his walker.

 

However shortly after he suddenly stopped standing up as though it was uncomfortable, he even stopped crawling for a number of weeks. In January 2011 we took Ollie for tests which started a 6 month process of trying to find out if there was a problem, and all the time Ollie made no attempts to walk and was barely crawling.

 

In June 2011 just after Ollies 2nd Birthday we found out that Ollie had Spinal Muscular Atrophy which is a Genetic condition passed from both myself and my wife Nicola who both have the same faulty gene which is responsible for producing protein in the body to enable the signal from the brain to pass to the relevant muscles to allow them to move and to grow. Myself and Nicola are both carriers of the faulty gene but everyone also has an exact copy of every gene which steps in when the other one is faulty.

 

However both myself and Nicola have passed our faulty gene to Ollie which means that his backup gene is also faulty.

 

The condition is a regressive condition which means that the strength he has now is the most it will ever be and he might get weaker as he gets older as it could spread to other muscles. At the minute Ollie is unable to walk at all and can't even stand up without help as his muscles are so weak and underdeveloped in his legs. He is strong in his upper body but probably is about 10 percent weaker than other children and his hands often tremble which is part of the condition.

 

The condition can come in three broad levels. Level 1 patients have the condition in the most severe form and generally don't survive past their second birthday due to the weakness in the muscles which effects the respiratory system and leads to breathing and chest conditions. Level 2 patients until recently were categorised as children who have never walked independently before the onset of the condition and can have a reduced life expectancy which used to be in the early 20's but due to advanced patient management now are thought to hopefully live a normal life expectancy. Level 3 patients have walked independently and can still stand and walk aided. Ollie has been categorised as a good level 2/poor level 3 patient.

 

There is no treatment or cure at present although research is ongoing but Ollie is faced with life in a wheelchair and he has a manual wheelchair (NHS) already.

 

To provide the best future for Ollie we have been fundraising to provide a specialist motorised wheelchair for Ollie which will allow him to stand upright and adjust his height to work surfaces. There are various designs on the market and we are still looking at which would be the best but they retail around £15,000.

 

We had an original target of £15,000 but due to people's generosity, we have gone way past this and are still receiving donations. We have had so much support from family, friends and people who don't even know us. No matter the amount donated, large or small every bit has and will help provide Ollie with everything he needs.

 

Along with donations, fundraising events have brought in large sums of money and has helped us explain about Ollie and his condition:-

 

On the 27th May 2012 we held a Zumbathon at The Parks Leisure Centre in North Shields where approximately 100 people attended. The Zumbathon was over 3 hours and there was also a raffle with fantastic prizes most of which were donated by local businesses in the Whitley Bay area.

 

On the 28th and 29th May 2012 Nicola's brother Lee and some of his work colleagues from a North Tyneside Police Station undertook the 3 Peaks Challenge and climbed Ben Nevis, Scafell Pike and Mount Snowdon in under 24hrs, again raising well over £1000.

 

On 9th June 2012 myself and Ollie joined many of the staff at Kids First Nursery based at Rake Lane to complete a bike ride from the nursery to Tynemouth and then along the coast to St Mary's Lighthouse. This is the nursery that Ollie attends and the staff are continually supportive of Ollie and ourselves.

 

On 25th of June 2012 at 12.00pm I set off with 4 other bike riders and a support team to complete a 260 mile bike ride in 24hrs visiting every working Police Station in Northumbria Police starting and finishing at Gateshead Police Station and completed the ride in 23hrs and 13 minutes.

 

On 14th and 15th of July, Nicola's cousin Michael and three others also undertook the Three Peaks Challenge and also completed the route in under 24hrs, raising £2000

 

In early July a family friend (Jim) set off to complete the Three Thousanders which is to climb to the summit of 15 mountains in Wales in one weekend.

 

And we still have some events to come;

 

Nicola is running the Great North Run on 16th September to raise even more sponsorship for both Ollie and also Disability Sports UK and at the end of September I am taking part in a Coast to Coast run which will be a team event with each participant running a half marathon across the country.

 

We now have enough money to be able to look at all available powered wheelchairs as well as a manual wheelchair that will give Ollie access to the beach. We may also have money left over which may assist with changes that we will have to make to our home to make it as easy as possible for Ollie to get around and have as much independence as possible.

 

We would like to thank everyone who has raised and donated money for Ollie, the support has been overwhelming and will make such a difference to Ollie and ourselves. A huge massive heartfelt thank you!!!

 

My charity

Metro Radio & Magic 1152's Cash for Kids

Metro Radio & Magic 1152's Cash for Kids

Charity Registration No. 1122062

Metro Radio and Magic 1152's Cash for Kids (formerly Just for Kids) supports the thousands of children across the North East of England who suffer abuse or neglect, are disabled and have special needs or who simply need extra care or guidance.We are tuned into the region and provide a helping hand when and where it is needed most.

Donations 351

Donation by Steve Fyall on 11/04/12

£10.00

+ £2.50 Gift Aid

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Wishing you the best of luck. From all Tracey Moonbeams raffles

Donation by Judy Baldwin on 10/04/12

£160.00

+ £40.00 Gift Aid

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Best wishes.

Donation by Mary Loftus on 10/04/12

£20.00

+ £5.00 Gift Aid

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GOOD LUCK !

Donation by Judy and Cyril x on 07/04/12

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Hope you reach the total in record time. Good luck.

Donation by Dave Lunn on 07/04/12

£20.00

+ £5.00 Gift Aid

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Hope all goes well for the ride and the fundraising.

Donation by Neil Harvey on 07/04/12

£10.00

+ £2.50 Gift Aid

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Donated by friends of Joy Crawshaw from Dinnington Comprehensive School - Thankyou very much.

Donation by Robert Crawshaw on 07/04/12

£55.00

+ £13.75 Gift Aid

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To our little Stinky Man, Love you to "infinity and beyond" all our love and kisses Uncle poohead, Auntie Loobie & Cousin Lucy Lou

Donation by Lee Baldwin on 06/04/12

£100.00

+ £25.00 Gift Aid

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Hi Rob, Good luck with the cycle ride. Lots of Love Lynn, James, Adam & Alice xxx

Donation by Lynn Gilchrist on 05/04/12

£50.00

+ £12.50 Gift Aid

Donation by Anonymous on 05/04/12

£10.00

+ £2.50 Gift Aid

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Good luck in reaching your target.

Donation by Sharon Walton on 05/04/12

£10.00

+ £2.50 Gift Aid

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Good luck to this sweet, beautiful little boy. You have a hard road to travel but with parents like yours, you will get there. Best wishes

Donation by Dawn redhead on 05/04/12

£100.00

+ £25.00 Gift Aid

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Our very best wishes to you all, good luck for your ride Rob, we hope you reach your target for little Ollie x

Donation by Sue and Roy Edwards on 05/04/12

£20.00

+ £5.00 Gift Aid

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HAPPY CYCLING ROB SURE YOU WILL REACH YOUR TARGET. LOOK FORWARD TO SEEING YOU ALL SOON. Love David &Marian xx

Donation by Marian Vinall on 05/04/12

£50.00

+ £12.50 Gift Aid

Donation by Anonymous on 05/04/12

£2.00

+ £0.50 Gift Aid

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Good Luck and hope you raise the cash needed.

Donation by Louise Gimza on 05/04/12

£10.00

+ £2.50 Gift Aid

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Good luck, hope you raise all the money and more

Donation by paul challoner on 05/04/12

£5.00

+ £1.25 Gift Aid

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Good luck!

Donation by Paul Dunn on 05/04/12

£5.00

+ £1.25 Gift Aid

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Good luck with the fundraising. We are thinking of you. Take care. Bisous to the 3 of you. Awena & Andy

Donation by Awena Robert on 04/04/12

Donation by Jayne Watson on 04/04/12

£5.00

+ £1.25 Gift Aid

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Ver best of luck with the fundraising and good luck Rob. Rose and Dermot (Sonya mam & Dad)

Donation by Rose Fitzgerald on 03/04/12

£15.00

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To my gorgeous Olichops...this little donation is from my clothing sales on Ebay. Big fat hugs and kisses and lots of love xxx

Donation by Auntie Lisa H on 01/04/12

£15.00

+ £3.75 Gift Aid

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Good luck to you Rob, hope Nic is up for rubbing cream into your saddle sores!!! Lots of hugs for you all, especially Ollie! From Marnie and Paul

Donation by Marnie Brennan on 01/04/12

£100.00

+ £25.00 Gift Aid

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Good luck Rob! From the Mowbray family

Donation by Anthony Mowbray on 01/04/12

£50.00

+ £12.50 Gift Aid

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Good luck! Hope it all goes well. From a work friend of Joy's.

Donation by Jo Edwards on 31/03/12

£20.00

+ £5.00 Gift Aid

Donation summary

  • * Online donations$43,425.76
  • Offline donations$0.00
  • Text donations$0.00
  • Total raised$43,425.76
  • Gift Aid$7,472.99

* Charities pay a small fee for our service. Find out how much it is and what we do for it.