LONDON -- He is the first person in Britain to be diagnosed with it, and one of only four children with the condition in the world.
Like his fellow young sufferers -- one in Italy and two in Brazil - - Archie Thompson will grow at the rate of a pound a week for the rest of his brief life, although doctors know so little about the condition that they are unable to predict how long that will be.
Afflicted with Momo syndrome, Archie weighs 84 pounds and is a month shy of 2 years old.
For his mother, Sarah Thompson, 34, looking after Archie is a full- time job. She also is battling with the authorities to get the disability equipment she needs.
Local authorities will not provide the family with an adapted car that could carry Archie's wheelchair. His mother cannot lift him into the family car.
"He's such an exceptional case, you'd think that they would be able to make an exception," she said. "He might not be here when he's 4."
Sarah Thompson and her husband, Nigel, 37, a driver for a special needs school, are already hard- pressed to cope with their two daughters, Mollie, 4, and Robyn, 11.
Very little is known about Momo syndrome, which stands for macrosomia obesity macrophaly. Geneticists estimate that it occurs in one in 100 million births. They do not know how long the average Momo patient lives.
While looking after Archie is draining, his mother said she would not change anything. "My aim is to give him the best quality of life while he's here, doing what any mother would," she said.
Sunday Telegraph
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