The story begins with our only child, Leon, at the tender age of 7 months contracting pneumococcal meningitis after a prolonged chest infection. Having been admitted to the Conquest Hospital in Hastings, he was initially diagnosed with a urine infection, but other organs in the body started to shut down and as a last attempt of diagnosis, a lumbar puncture was taken, and a strain of meningitis was present.
Leon was retrieved immediately to Guys Hospital in London. We learnt after the event that the retrieval team had to resuscitate Leon in the ambulance. He was in intensive care for a total of two weeks. He was extremely ill and every hour tests were done and he was monitored as situations changed so severely and quickly.
Having had a brain scan, we were told that the swelling to his brain caused by the disease may result in him not being able to walk, talk, hear or see properly. This would affect his future quality of life and we were asked to consider the possibilities of stopping treatment if Leon’s condition worsened and severe neurological problems meant he would need constant medication and care throughout the rest of his life. Our joint answer to this proposal was ‘we would sooner have a son taking medication and receiving constant care than not have a son at all’. Horrific was not the word but as parents you just deal with any situation and battle on.
Six weeks after leaving Guys hospital we went back to the children’s ward at the Conquest, and started to realise the uphill battle that we had to do for Leon. Hearing checks were made, which came back as being OK. His sight was checked and again came back OK. Leon’s muscle development was not good though. The disease had affected all of his muscles and he was unable to hold himself up as a baby and had regressed back to milk from solids also.
We started Physiotherapy immediately. Leon had weekly sessions until he was four years old. We had to start with his top half - building up his upper body and core strength so that he would be able to sit up right. The next worry was that his lower body strength as he may never walk. As parents we really know the meaning of the phrase “cruel to be kind” because we had to harness Leon into a wooden standing frame so that his body weight would then be transferred to his leg muscles. The pain was clearly evident as Leon would scream each time we placed him into this contraption. However, this pain was worth it as after several months Leon started to move around the floor - by his arms firstly. He took his very first steps at the age of approx 18 months. The joy was indescribable.
Occupational therapy was needed to help Leon with holding cutlery and holding a pencil. We needed to purchase specialised equipment to help with these everyday tasks, but things were definitely moving in the right direction. A Paediatric Consultant at Conquest oversaw his progress, making sure that everything was being done to ensure life was as easy as possible before he started the transition into school life.
Everybody talks about the terrible twos and temper tantrums, but one of the side effects of this disease is the terrible pent up anger that the person has. It would just build up to a crescendo and then blow!! Leon had these episodes frequently and it was purely because he would get so frustrated with not being able to do something for himself that he would show frustration towards us as parents and whoever was around him at the time.
We made a suggestion to the paediatric consultant of him being able to do a martial art when he was old enough, to help him channel this built up aggression and to help with his co-ordination, and muscular advancement. The answer was no as she thought that due to Leon’s hyperflexic muscle range, it would do more damage than good. Her advice was he should never venture into this type of sport.
But against this advice, we decided to take Leon along to a local martial art class when he was six years old. The school were very helpful and understanding. Leon started the Traditional Korean martial art of Kuk Sool Won and obtained his first promotion to yellow belt just after his seventh birthday. He practised this art initially for a year and a half, but found the mental learning too intense and we decided to take him out of the sport because Leon wanted to try a new challenge with football. But by eight and a half, he decided that his foot balling urge was over and martial art was more challenging.
Now at the age of eleven he is a brown belt and starts training to become a black belt in September . He is also a European Gold medal winner for his age group and UK Silver medallist in four events. His ambitions within Kuk Sool Won is limitless and has joked with us saying that his goal is to become a Master at the age of 35, and that students could then call him Master Leon.
As his parents, we are extremely proud of our son - as someone who may inspire the young people who have suffered this terrible disease and with hard work and determination and never mentally or physically giving up, that you can achieve.
Leon’s martial arts instructor Rob Holmes, 4th Dan WKSA, says: ‘I am very proud of all of Leon’s achievements since coming to us. He has never complained about anything and always strives to make himself better at what he has been taught, despite the difficulties he faces, he gets on with it. This is a great, and rare, quality to find in someone so young and I’m sure it will set him in good stead for the future. I am looking forward to Leon achieving his black belt rank and pushing his talent even further.’
Video courtesy Gareth Evans
CLAIRE & MIKE STANBRIDGE