Charlie s Story so far:

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 achieving milestones that I was not close to. 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. I have also had a number of seizures some lasting up to an hour and an EEG confirmed that Epileptic waves are being emitted and I am now on medication for this. 

Despite my troubles, 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.

Incredibly, and with an overwhelming response from the local community, we managed to raise £60,000 to be able to to make to America for an operation called Selective Dorsal Rhizotomy. This operation involved going in to my spinal cord and severing the nerves that are causing excess spasticity. This removed all the spasticity in my legs and left me pain free. SDR is not a miracle cure and hard work is required. After the surgery I was left very weak and a lot of hard work is required for me to strengthen my muscles. I have been able to employ a private physio for 3/4 times a week and I am making good progress. Whilst in America my mum thought an eye assessment would be beneficial as I had a right sided convergent squint. It was picked up that I was experiencing double vision and strabismus surgery was needed. The cost of this was around £10,000, but I now have beautiful straight eyes and my fine motor dexterity has improved. 

Also as a result of our fundraising activity, I have been able to get a TomCat Tiger Trike which I love. My mummy has completed a course on the Bowen Technique to be able to treat me at home and I have had many sessions of intensive physiotherapy at Footsteps in Oxford at a cost of £1500 each. 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, a Leckey GoToSeat to enable me to sit at tables at restaurants, on the swings, shopping trolleys etc, a Leckey Upsee which enables me to play football in the garden with Daddy, and a P Pod which is a comfy seat for me to relax in. 

I am working so hard though and have even started to take steps in my kaye walker. I am doing well at sitting unsupported but my left hand is still fisted much of the time which affects my ability to hold toys. I am making real steps towards being able to sit unsupported and have even started to commando crawl. Although very chatty now although I still have speech delay. I am having problems gaining weight. I find it difficult to chew and get tired which significantly reduces the amount of food I consume.

Unfortunately I think stairs will always be a problem for me, so my parents now need to look at adapting our home to accommodate my needs and I am proving more difficult to carry and there are concerns for my safety and the health of my parents in the toll it takes to carry me. So far our local authority has agreed to put £18,000 towards a new ground floor bedroom and wetroom for me, but the estimated cost is around £40-60,000 which is a sum way beyond my families means. 

Disability comes with such a high price tag and we hope you will continue to show me your generosity and support. My quality of life has vastly improved and I am so so grateful and thankful to everyone that has helped so far, but I am sure you will agree that I am a worthy cause. 

From the bottom of my heart, thank you for supporting me and to see more information please visit www.facebook.com/charlieGraingerfundraiser. 

Charlie x

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Thanks for taking the time to visit my JustGiving page.

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. So it’s the most efficient way to donate – saving time and cutting costs for the charity.