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 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 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 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.
I have 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.
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 completed a course on the Bowen Technique to be able to treat me at home and I have had 2 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.
We were over the moon that we hit our £60,000 target and I was able to go to St Louis, Missouri to have the Selective Dorsal Rhizothomy (SDR) surgery. This procedure involved removing some of the nerve connections from my muscles to my spinal cord that caused the immobility and stiffness in my legs. This surgery was done on the 27th August 2013 and all the spasticity from my legs has been eliminated so I am now free from pain. Whilst I was in America, my Mum thought it would be a good idea to have an eye assessment as I had a right sided convergent squint. The Dr there said I was experiencing double vision so we took the decision to have Strabismus surgery to correct this and I now have beautifully straight eyes. 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 4 times a week and I am making good progress.
Thanks to everyone's generosity and support my quality of life has vastly improved and I am so so grateful. Unfortunately the requirement to continually fund raise is essential to continue to access therapy, equipment and surgery. My physiotherapy requirements cost £10,000 per annum and I will also need to buy equipment that is not funded by the NHS, 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 https://www.facebook.com/charliegraingerfundraiser.