Case Histories

Clare's Story

I was born on Christmas Eve 1998. I became ill at the beginning of November 1999 after 3 "doctors" examined me for 4 days! My mum and dad took me to hospital where we discovered, in 30 minutes, that I had pneumoccal meningitis. I spent my first birthday, Christmas and the Millennium in hospital after 3 brain operations. I was let out with the news that I had Quadriplegic Spasticity; in other words I would never walk, talk or feed properly. The "experts" wanted to put a tube in my tummy so that I could be fed. They also drugged me up so much with a concoction of "medicine". When I got home I couldn't sit upright, had to be fed through a nasogastric tube and was generally very unhappy. My mummy gave me a teet every day dipped in honey to get me to suck to rid me of this awful tube.

Eventually I learned to suck very gently and even managed a smile from the right-hand side of my mouth (my left was still paralysed). I gradually started drinking milk from a bottle but couldn't hold up my head or hold my body straight. Even getting my nappy changed was very uncomfortable lying on my back. The "doctors" said it was just my condition; there was no other rhyme or reason! After my Nitrazapam and kiss good night I still couldn't sleep a full night. All I had by way of help was half-hour visits from my physiotherapist once a fortnight.

One day my grandma was reading a newspaper and saw an article about this new treatment called Advanced Neuromotor Rehabilitation that helped children with my problems, so mummy and daddy took me down to East Grinstead and I met my new friend Linda Scotson. She examined me and said she could help. I had no movement in my arms and little movement in my legs; my posture was poor and I had no head control. All I could eat was jars of baby food and drink milk from a bottle, even though I was a big 2 year old by now.

A year and a half onwards I can sit up straight, hold my head up all by myself and kick my legs, and my arms move too! I can eat better foods and drink out of a cup. Daddy calls me his little flower and I hope someday I'll be able to bloom fully.