Hello! I’m Xavier. I’m three, and I’d like to thank you for visiting my website.
Although I don’t remember too much, things didn’t go very well when I was born and I had to spend a couple of weeks in hospital before finally being able to come home.
I felt ok at first, but couldn’t go on my tummy or roll over. The doctors thought I might be a bit slow (cheek!) and reminded me how lucky I was to even be here, and that’s very true. However when I was 18 months old and I still hadn’t rolled over or began crawling the doctors asked me to see the physiotherapists and I found out I had Cerebral Palsy. As I’ve got older I’ve found my muscles in my legs have got really tight. I can only stand on my tiptoes and I can’t fully straighten my knees and hips on my own.
Everyone is trying their very best. I have physiotherapy for a couple of hours every day and see my physio friends, Shona, Lauren, Amy and Becky almost every week, and Rob is my favourite OT as he brings me ice-cream. I also get to go swimming every week as we have a hydrotherapy pool just down the road from me in Peckham. My teachers at the nursery help out and they help me to stand so I can use both my hands at the same time to play. They also help me to play and join in with my friends, which I wouldn’t be able to do very well on my own.
I’ve been to see a doctor at the Evelina Children’s Hospital in London. He sees children with problems like mine and said Botox might be good for me. I pointed out I naturally look quite young, but he explained the Botox would go into my stiff muscles to make them less stiff, which has helped a little bit, but even this is only temporary. The doctor is sending me to see one of his friends, as he is a little worried about my hips. It’s all the running around that other children do that helps their hips to form normally, but I am trying my very best to catch up.
Mummy and Daddy help me with everything. We go to lots of places and they always help me to join in. Mummy doesn’t go to work any more as she needs to take me to all the places I have to go to see my doctors and therapists. At Daddy’s work he met a lady called Veronica and she told Daddy about her friend, Matt, whose son, Chris, had the same problem as me. Chris went to America to have an operation called SDR that really helped. Mummy and Daddy had heard of this, but also read that there were some serious risks and complications. They went to meet up with Matt who explained that he asked the surgeon, Dr. Park, about any problems. He explained that in all the years he has been doing this surgery he has only had one child with any serious complications that might be as a result of the surgery.
At my nursery they call me Happy Xavier, as I am always smiling and happy, and I like talking to everyone. I’ve been given lots of things to help me – I’ve got a really cool bright green walker to help me (I call it my racing car). Everyone looks at me and smiles when I am out and often say hello to me. I’ve also got a smart standing frame that I am strapped into that gives me a good stretch and means I can have both my hands free to play with things. I’ve even got a blue badge that I can put in Mummy and Daddy’s car and I can park almost anywhere, but all of these nice things can’t help me walk and keep up with my friends.
I’m going to go to school in September 2013 and would really like to have my operation before I start so I can join at the same time as my friends, which I think is really important. I’m hoping to have my operation in June so that will give me some time to get better.
Daddy says that Winston Churchill once said “We make a living by what we get, but we make a life by what we give”. I don’t quite understand this yet, but daddy says that we all do, one day.
I don’t know what the future will be like for me, but I do know it will be a lot brighter with your help. Thank you for any help you can give. X x