Laurence Moon Bardet Biedl Society
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LMBBS Laurence Moon Bardet Biedl Society |
James Humphreys has LMBBS and is now 25. He is a massive fan of adrenaline sports of all kinds. His mother Chris writes about how he overcame behavioural problems in childhood, and later reduced his weight and got fit after losing his sight.
James’ early years were fraught with frustration. He came to us as a three week old foster child whose only supposed problem was “talipes” or club feet. He also had an extra digit on his left foot. He now has no near vision with extremely limited tunnelled vision, and we expect him to eventually lose his sight completely.
Early on, James had problems with sleeping, violent tantrums and other hyperactive behaviour. He had bad reactions to medicines and anaesthetics, causing immense problems with surgery.
These problems were solved at three years 10 months a consultant put me in touch with the Hyperactive Children’s Support Group. Within days of removing all additives from his diet we had a child who slept for 5 hours a night. We discovered it was the colourings in the pre-meds and medicines that were causing the problems with anaesthetics, so another problem solved.
When he was eight his weight suddenly began to spiral and James became less active. His overall behaviour improved thanks to a change of schools at 10 years and a special needs teacher in mainstream who understood his needs. However James had became very lethargic, had severe high temperatures almost monthly and would gain several pounds in just a few days.
After surgery damaged a nerve, James had over two years of constant pain, with visits to pain clinics and daily analgesics. He was left with a drop foot and had to wear a calliper. He became virtually wheelchair-bound for any outdoor activities.
At the age of 15 James was registered as blind. At roughly the same time, with my help he weaned himself all drugs and coped with the pain himself. We decided that there would be no more surgery!
The turning point came in June 2001 while on holiday in Majorca when James had a go on a dual jet ski on the local lake. After this high-adrenalin experience, he realised that his next ambition was to do a parachute jump.
When we returned home we investigated parachute jumping and found out that the maximum weight was 14 st. James immediately made the decision that in order to achieve his dream he would start a healthy eating plan. His diet shifted to healthy salads, fish and poultry, with a total pudding ban in place.
The following spring after successfully losing well over five stone, James completed his jump from an aeroplane at 10,000 feet, with his proud family watching him land. “Totally and utterly brilliant” he said, beaming as he returned. He managed to raise more than £2000 for the LMBBS Society that day and has done several more sponsored events since then.
Since losing weight James has had no need for any surgery on his knees, is pain free and leads a very active life. He now attends the gym three times a week with his older sister, with so much energy he leaves her feeling exhausted.
A post-script from James:
So far I have tried: abseiling, wall climbing, quad biking, snorkelling, zip wire, archery, kayaking, rock climbing, horse riding, canoeing, speed boat, pony and trap. As you can see I lead an exciting life. I keep active in between my exploits, attending the gym and working out at home, swimming and aikido, having recently achieved my yellow belt. None of these things would have been possible if I hadn’t made the decision in June 2001 to lose weight.
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My mum helped me with a sensible low calorie, healthy eating plan. I started to exercise more and suddenly the weight started to fall off. In April 2002 weighing 12st 13lb I completed my first parachute jump and boy did it feel good. I went on to lose another two stone 7lb. Five years on and I have maintained my weight at 12 stone.
Since beginning my healthy eating plan I have not eaten a crisp, biscuit, sweet, chocolate, chip or fried food. I have gone from not liking vegetables to eating several portions a day. I don’t have a favourite food as since I began eating healthily, I enjoy everything.
Most of all I enjoy being able to shop for clothes in a size Medium and not XXX Large. And although we have to buy two pairs of trainers at a time, because of my different size club feet, it is great not to have to wear orthopaedic boots made by the hospital.
Losing weight has made such a difference to my life. I have gone from being a couch potato to having the confidence, with the help of my parents, rehab officer and family aides to live an active and independent life. As I have said “Who needs sight to achieve your ambitions?”.