Story

I am one of twins, born 10 weeks early by Emergency C-Section, weighing just 2lbs, on the 24th August 2009. The doctors and nurses at St Peters and Frimley Park Hospital did a fantastic job taking care of me and I was able to come home after 7 weeks in the Special Care Unit.

Mummy and Daddy became concerned about me as although you mustn't compare children, when I was 8 months, it became obvious my brother Bobby was achieiving milestones that I was not close to achieving. I struggled to hold my head up and my hands were clenched tight the majority of the time. I could not roll over or sit unsupported.  At the follow up appointment with the Paediatrician we were told they suspected I had spastic quadraplegic cerebral palsy and this was later confirmed by an MRI scan at 12 months.

Bobby and I both had inguinal hernias and I also had to have a hypospadius operation. Additionally I have a squint and wear a patch over my left eye to strengthen my right and in the future will require corrective surgery for this.

I am such a happy, sociable little boy, never happier than when being cuddled and read to. Bobby and I have a very special bond. We share a Bedroom and Bobby often sings to me at night which has me reduced to fits of laughter.

I have to wear night shorts in bed. These have velcro running up the sides with a half plastic hoop round his crutch to ensure his hips are kept in a good position. I also wear a lycra suit during the day to give me extra support around my core.

I am now able to roll over but my left hand is still fisted much of the time which affects my ability to hold toys. Although not able to be left, I am making real steps towards being able to sit unsupported. Although very chatty now although I still have speech delay. I see a dietician as I am having problems gaining weight. I find it difficult to chew and get tired which significantly reduces the amount of food I consume.

I have had a number of seizures some lasting up to an hour and an EEG confirmed that Epilpetic waves are being emitted and I am now on medication for this. 

My family have been overwhelmed by the support and generosity shown to me so far and I am pleased to say that as a result of our fundraising activity, I have been able to get a TomCat Tiger Trike which I love. My mummy has enrolled on a course to learn the Bowen Technique to be able to treat me at home and we have an upcoming assessment at Footsteps in Oxford for intensive physiotherapy. I have also been able to get an IPad to assist me in my communication and to help develop my hand eye co-ordination and fine motor skills.

It is my dream to one day be able to walk. I am hoping that I will one day be able to go to America to have the Selective Dorsal Rhizothomy procedure which could make this dream a reality. This procedure involves removing some of the nerve connections from my muscles to my spinal cord that cause the immobility and stiffness in my legs. St Louis Hospital, Missouri have advised that it they believe I could be eligible for this procedure once I can sit unsupported and am able to crawl. I have made great steps towards sitting unsupported and I hope with the intensive physiotherapy course we have managed to book thanks to everyone's kind donations I will be well on the way to crawling and be able to have this operation. After the operation I would need intensive physiotherapy for at least 6 months, but this could be truely life-changing, give me more freedom and enable me to play with my peers. The cost of this procedure, including the required intensive physiotherapy afterwards is around £60,000.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate now. Thank you so much for helping me and to see more information please see https://www.facebook.com/pages/Charlie-Grainger-Fundraiser/360345237318261 .

Charlie xx

 

Updates 5

Charlie has had his SDR and is working really hard at his physio. Charlie also had the strabismus op which cost $13,000 to correct his double vision. We felt this was key to improving his balance and motor skills. Thank you so much to you all for the opportunities you have given.

17/09/13 19:56

I am delighted to say we are flying to America for this life changing surgery on the 23rd August. We are just £8,000 short of our target to cover required physio after. Thank you so much to you all for supporting Charlie in his next steps and making our dream a reality.

29/06/13 10:55

Dr Park confirmed that Charlie is a good candidate for SDR and strongly recommends to permanently reduce the spasticity and improve Charlie's overall comfort. He feels that Charlie will be able to walk with assistance of a frame and his upper dexterity will improve. £8k to go!

19/06/13 07:45

Charlie's Fun Day on the 2nd March from 2-6 pm at Deepcut Community Centre. Teddy tombola, Alcohol Tombola, Golden Egg, Circus tricks for the 3-7 year olds by Sense Theatre, Beat the goalie by Sports4kids, meet Mickey Mouse, courtesy of Make Your Day Mascots, raffle and stalls.

09/01/13 22:39

Children with Special Needs Foundation have ringfenced £10,000 for us which will be awarded to us upon reaching £50,000. This has made the target so much more achievable. We are over the moon that this could really happen for our little man. Thanks to you all for efforts so far x

26/11/12 21:27

Raising money for

Tree of Hope

Tree of Hope

Charity Registration No. 1149254 In Scotland SC042611

Tree of Hope offers hope to the families of sick children in the UK who need specialist medical surgery, treatment, therapy and equipment in order to free them from suffering, giving a better quality to their young lives. England & Wales 1043092 Scotland SCO4261 http://www.treeofhope.org.uk

Donations 353

Seems if you shake the couch hard enough you can always find a little bit more :)

Donation by Anonymous on 12/03/14

£100.00

+ £25.00 Gift Aid

Love seeing you in your new chair..........here's a bit towards it. Big hugs... the Byrnes x

Donation by Stephanie Byrne on 02/03/14

£20.00

+ £5.00 Gift Aid

For a Brave Determine young boy and his Wonderful family and friends.

Donation by Anonymous on 25/02/14

£250.00

+ £62.50 Gift Aid

Donation by Angharad Marsh on 04/02/14

£50.00

+ £12.50 Gift Aid

Donation by Ellie R on 24/01/14

£70.00

+ £17.50 Gift Aid

From Uncle Tom in lieu of his birthday present. X

Donation by Denise Barker on 23/01/14

£35.00

+ £8.75 Gift Aid

Donation by Anonymous on 03/01/14

£200.00

+ £50.00 Gift Aid

Donation by Anonymous on 03/01/14

£20.00

For Charlie in lieu of Uncle Tom's Christmas present. Xxx

Donation by Denise Barker on 24/12/13

£40.00

+ £10.00 Gift Aid

Donation by jo Spencer x on 24/12/13

£50.00

+ £12.50 Gift Aid

Hi Laura, we are testing if we can donate with a NZ credit card so Mum and Dad can donate more regularly. xx

Donation by The Ladds on 23/12/13

£5.00

This is the donation from the Usborne Online sale for Charlie. Thanks for the opportunity and have a wonderful Christmas x

Donation by Kemi on 23/12/13

£23.98

+ £6.00 Gift Aid

Lots of love from John, Wendy, Anna, Perry and Leola xx

Donation by The Ladds and Vlachos's on 22/12/13

£200.00

+ £50.00 Gift Aid

Happy Christmas x

Donation by Angy, Chris and Harry xxx on 20/12/13

£10.00

+ £2.50 Gift Aid

Donation by Anonymous on 20/12/13

£5.00

+ £1.25 Gift Aid

Instead of sending Christmas Cards we wanted to support Charlie instead by making this donation. Merry Christmas to the Grainger Family x

Donation by The Ferrone Family on 19/12/13

£25.00

+ £6.25 Gift Aid

Hi Payment for the Under 16 Driving Experience we won at the auction. Thanks for a great night. Merry Christmas .

Donation by Rebecca Iaciofano on 19/12/13

£135.00

+ £33.75 Gift Aid

As promised, what I would've spent on Xmas cards. I'd much rather give it to Charlie xx hope you guys all have a wonderful Christmas lots of love Paula Steve Charlie and Samuel xxxxx

Donation by Paula Bristow on 16/12/13

£50.00

+ £12.50 Gift Aid

With lots of love to Charlie from Thelma Hatton ( great grandma to Georgia and Jack) xx

Donation by judith grainger on 12/12/13

£300.00

+ £75.00 Gift Aid

Hi Laura and Simon congratulations on such a successful fundraising evening we really enjoyed it. Here's a donation for the book as promised. Take care Sue x

Donation by Sue Garth on 28/11/13

£20.00

+ £5.00 Gift Aid

xxxxx

Donation by Karen Kennedy on 25/11/13

£150.00

+ £37.50 Gift Aid

Thanks for a fabulous evening last Sat. Here's £40 from Viv Reed and £50 donation from our lovely neighbours, Christine and Philip,xxx

Donation by Judith Grainger on 23/11/13

£90.00

+ £22.50 Gift Aid

Hi Laura This is for my Auction win of the Watercress Line Dinner for two = £100. Catch up soon xxx

Donation by Laura Chinn on 22/11/13

£100.00

+ £25.00 Gift Aid

Ball Auction Real Ale Train

Donation by Tom, Mike, Biaz, John on 21/11/13

£100.00

+ £25.00 Gift Aid

Ball Auction -Sunglasses

Donation by John Schofield on 20/11/13

£150.00

+ £37.50 Gift Aid

Donation summary

  • * Online donations£21,599.19
  • Offline donations£20,558.00
  • Text donations£0.00
  • Total raised£42,157.19
  • Gift Aid£4,722.30

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