Charlies 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 wears a patch over my left eye to strengthen his 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 room with cots beside each other. 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 couple of night seizures, which led me to have an EEG which confirmed that "Epilleptic Waves" are being emitted. As I have only had couple of fits I am not yet required to be put on medication, but the Doctor suspects that these seizures will become more regular.

The 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 xxThanks 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 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.