News and Events

Sam G. - Wales - A tale of unbelievable courage

We were approached by the family of young Sam in the hope that we will be able to grant his dream to own a specialised all terrain wheelchair. Sam has always wanted to join his family on country walks and stroll along the beach but unfortunately a normal power chair means he has been unable to do this.
Sam has Duchene Muscular Dystrophy a muscle wasting condition that affects the whole body. Sam has some use in his hands and very limited use of his arms. He cannot support any weight on his legs confining him to his power chair he has severe contractures in all his joints. The worst being his hips knees and feet and cannot straighten his legs. These contractures cause him constant pain and make moving him in the hoist difficult and uncomfortable.
His heart muscle has been severely affected and Sam needs to take dangerous drugs to control severe cardiomyopathy. Fortunately his respiratory muscles, although poor, are functioning independently although due to virtually no cough reflex the fear of chest infections are a constant worry.
Unfortunately in February 2006 Sam developed a bowel obstruction due to damage of the smooth muscle in the abdomen and had to go into hospital for an operation to remove a blockage and repair a twisted intestinal wall. He was in intensive care for a while on a ventilator; the surgery was considered a huge risk for a Duchene boy. He surprised even the medical staff by his recovery considering his other problems but then sadly a week later he developed an arterial bleed nearly losing his life he was given emergency surgery and his family were told Sam had little chance of survival. Again on a ventilator and once again against all odds Sam somehow made it. He was recovering well in the critical care unit, but a week later, like a nightmare, he had yet another arterial bleed in his stomach and needed a further operation. His family was told that the risk of this third operation in as many weeks would be extremely high. He had to be resuscitated after surgery and was seriously unwell but somehow he never stopped fighting for his life. Sam needed a tracheotomy, an opening in his neck, to help him breathe with a ventilator and he then developed a chest infection and had to have tubes inserted into his lungs to clear the mucus. Sam could not talk; his contractures caused him unbearable pain but he just kept on fighting and although he cried never lost his will to live. Due to his Muscular Dystrophy the doctors believed he would have to spend the rest of his life with the tracheotomy. He was determined to breathe and worked to exhaustion to breathe for himself. Many young people with Duchene are now able to live longer with the help of a permanent tracheotomy this may well need to be considered again in the future some people prefer not to live with such an invasive machine but Sam says he wants to live so much he is prepared to put up with the discomfort. Sam was starting to get better when a week later he started to go downhill again and became extremely ill again. It turned out that he had picked up MRSA in the hospital and needed to reopen the wound. This left an 18 x 12 inch hole in his abdomen which he was told would take about a year to heal. Amazingly, within a couple of months Sam was able to learn to breathe on his own and had the tracheotomy removed and learnt to talk again, a milestone the doctors did not believe he would reach.
During the year Sam was recovering from MRSA he was also in agonising pain from Carpel Tunnel Syndrome a painful condition of the nerves in the hand due to all the lines he had endured in hospital So many veins broke down that he had lines placed in his legs and feet and his neck. The stress of what he had been through caused him to lose all his hair, which has now re grown. Before the loss it was straight he now has loads of gorgeous curls. He saw the district nurses for the last time in February almost a year to the day and is very self-conscious of his looks, as the wound did not heal correctly and now his stomach is huge and he no longer has a belly button. He thinks he looks pregnant and feels very isolated due to this and his large electric wheelchair, he notices that people are scared to approach or talk to him. His family have worked hard with physiotherapy to help Sam get movement back in his hands and arms. Not least of all Sam, who constantly asked for more stretches and movements, his dogged determination to regain something of what he had lost was an inspiration to all.
Sam's normal power chair restricts where he can go and his greatest dream is to be able to go to the woods with the dogs and go onto the beach with his family, places they avoid going except when Sam is away for respite. The 'Boma' all terrain power wheelchair requested is a completely new design by a wheelchair user who felt denied the things he could do before his spinal injury. The chair costs £8,000 and even with hard negotiation and money raised by Sam's devoted family they were unable to raise the full cost and desperately need help to raise the final £3,000
As a tribute to this young man's incredible courage against all the odds, we had absolutely no hesitation in funding the outstanding amount needed to ensure that Sam's dream came true. Sam, We wish Sam many years of enjoyment from his all terrain wheelchair.