Hi, thanks for stopping by. My name’s Amelia, I’m 3 and a half and live in Brighton with my mommy, daddy and my dog Louis who is of great assistance to me as an emotional support. I was born 2.5 months (10 weeks) prematurely and weighed little more than a grain of sand, easily fitting in my daddy’s hand. For the first few weeks I regularly suffered with Apnea, which is where I forgot to breathe by myself because the respiratory centre of the brain which tells the lungs to take a breath on a regular basis was not fully developed and mature enough yet.
Finally, after 25 days in hospital I was allowed to come home. Since then I have been diagnosed with the long term spastic diplegia cerebral palsy. This is a very painful condition which mostly affects my limbs and predominantly means that the muscles in my legs are permanently contracted, meaning that I cannot put my feet down flat on the ground and can only walk very short distances on the extreme tip of my toes. I have to be supervised at all times, in part this is because when I fall over which I do hundreds of times a day I am unable to stand up again unaided. I also have difficulty with my left arm and movements are a little disjointed
The good news is that I have been selected and approved by Great Ormond Street Hospital for a life altering operation called Selective Dorsal Rhizotomy (SDR). They are going to cut about 70% of the nerves in my spinal cord. As scary as this sounds it should God willing dramatically reduce the stiffness in my legs and fingers crossed I will in time after lots of physiotherapy be able to walk, run and jump with my friends. Right now I have to stand and watch from the side while my friends play, but with your help I will be right there in the middle of it joining in walking and running around.
If I could wish for any miracle it would be simply just to be able to do what people regard as normal, things like taking Louis for a walk with my Mum or to throw a ball for him or ride a bike. My ultimate dream though would be to go to Stagecoach dance and ballet classes and dance like a real princess.
Unfortunately, SDR whilst recognised by the NHS my treatment and operation are not currently funded and we need to raise at least £85,000 in the first instance for the operation and initial 2 years of intense rehabilitation physiotherapy. I will be needing specialist physio at least 3 times a week for the first two years and then an on-going but reduced physio programme after that. There is no quick fix and this is a long term commitment but with your help it will make all the difference.
Thank you so much from the bottom of my heart and from all my family for taking the time to read my story and for your support. It really does mean the world to me.
Footnote: A donor has very kindly come forward with a £27,000 donation to cover the cost of the initial operation. All funds raised will be used for intensive rehabilitation and physiotherapy.
