Tom was the first severely disabled child known to have received treatment for the alleviation of growth while maintaining small never
When Tom's parents first explored the idea of ??the "Ashley treatment" for his son, who suffered from severe cerebral palsy, they met an obstacle. Ashley, the first disabled child to attend a course of medical and surgical treatment intended to keep her little forever, was a girl. The cocktail of procedures have never been applied to a child.
But Tom, his first son, who adopted him as a baby from Vietnam, became bigger, stronger and heavier. It was increasingly difficult to achieve and maintain.
With that thought in mind, we made a decision that would take - and Tom - into unknown territory and medical ethics
Tom is considered the first disabled child to undergo an attenuation of growth (GA) hormone treatment to keep your toddler to the rest of his life.
The Guardian has learned that there are at least 12 families from around the world, perhaps more than 100 - who have undergone or are undergoing treatment, which became the subject of intense debate acceptable limits of medical intervention in the management of children with severe disabilities.
Tom's mother, who is 50, agreed to talk with the tutor on condition of anonymity. She said she learned the extent of the disability of her son when he was two years would not sit, walk, eat or talk, and that his seizures could be fatal. She then promised she would do anything to help. GA treatment, he feels, is part of that promise.
she said. . "If you had an eight year old boy who had cancer, they would not ask, we give chemotherapy to just do all the medical treatment is to play God, is to interfere with nature. This has to do with respect a human being who needs help. "
Tom, who is 12, but has the cognitive ability of a baby two months old and is totally dependent, according to his mother, is close to the end of treatment, which began when he was nearly eight years. It weighs 70 pounds (32 kg) is 53In height (134cm) and is likely to stay that size forever.
Tom's life with his parents and younger sister in Europe - his mother refused to specify the country and refused to provide the Guardian with a picture, and he is happy, he said, between his family when he is being embraced. Because you can not move independently, to take to his bed to a mat on the floor or outside in the garden.
children and Tom are difficult to transport, he said, "because they are so strong and the muscles are so tense. A child who weighs 25 kg seems to be the weight of three due to muscle spasms. "
His first encounter with Tom would endocrinologist that lasted one hour. The doctor has never had a child with a disability before GA therapy, although he used a similar treatment in children who had grown extraordinarily high. He said he would use estrogen to accelerate the natural closure of growth plates and Tom, in turn, stop the growth of the child.
Many questions Tom's mother went unanswered doctor.
"I asked about medications, causing more crises, it will affect sleep, will affect their food problems had to be repeated, saying?" I do not know I know, I do not know. "
However, the endocrinologist said he was sure and when he tried to children who were too high, never had any complications.
The mother Tom said that the potential of your child's sexuality, which has a normal life expectancy, first had no problems, because at that time was only eight years. But after GA therapy discuss with the doctor found that puberty can be very annoying experience. As a child, for example, Tom was always very nervous when she has her hair cut, trim his beard was concerned, it could cause similar problems
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