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Providing information, education, and training to build knowledge, develop skills, and change attitudes that will lead to increased independence, productivity, self determination, integration and inclusion (IPSII) for people with developmental disabilities and their families.

Family Court To Decide If 17-Month-Old Boy Should Live Or Die
By Dave Reynolds, Inclusion Daily Express
March 3, 2006

LONDON, ENGLAND--In what is being called a potential landmark case, a High Court judge heard arguments this week from a hospital that wants to remove a life-supporting ventilator from a 17-month-old boy and let him die -- against the wishes of his parents.

The child, identified only as "M.B." for privacy reasons, has spinal muscular atrophy, a type of motor neuron disease that has weakened his muscles to the point that he cannot eat or breathe on his own.

Doctors at the hospital where the boy is staying, the name of which is also being protected, claim that his quality of life is poor and he, therefore, should be taken off the ventilator.

His parents, however, have requested that he undergo a tracheotomy -- an operation in which a breathing tube would be permanently inserted through a hole in his throat -- so that he can go home with them to live.

Wednesday's hearing before Mr. Justice Holman of the High Court's Family Division came less than a week after another judge ruled that St. Mary's Hospital could refuse a ventilator for two-year-old Charlotte Wyatt if she stops breathing.

What makes this case different from Charlotte's, and those of other people with certain disabilities and medical conditions that doctors have wanted to remove life-saving treatment, is the fact that spinal muscular atrophy does not normally affect the brain. M.B.'s parents say he understands everything around him and responds to them.

"We want our son to have a tracheotomy so we could take him home and give him a life instead of him being stuck in a hospital cubicle," MB's mother told the Independent. "We are very hopeful we can persuade the court that his quality of life is good enough so that treatment should not be withdrawn."

According to Families of Spinal Muscular Atrophy, 50 percent of children diagnosed with SMA before age two will die before their second birthday.

Anita Macaulay, chief executive of the Jennifer Trust for Spinal Muscular Atrophy, told the BBC that pioneering work in the United States has allowed some children to live at home with a relatively good quality of life until age seven or eight and beyond.

The case is expected to continue on Monday.

"Court to rule on allowing severely disabled boy to die" (The Independent)
"Ruling due on right-to-life baby" (BBC News)
Families of Spinal Muscular Atrophy
Jennifer Trust for Spinal Muscular Atrophy


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