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Ontario to screen all newborns for rare immune disease

David Vetter, born with an inherited disorder, which leaves him no natural immunities against disease, is shown in this Dec. 17, 1976 file photo in Texas.  In 1984, Vetter died from complications of an experimental bone marrow transplant, thought to be his only chance at survival outside his bubble.

AP Photo/File

Ontario has become the first province in the country to screen all newborns for a rare and often fatal condition that robs the body of its ability to fight infection.

Known as severe combined immunodeficiency, or SCID, the disease was made famous by the case of David Vetter, the Texas boy who lived most of his life in a sterile plastic cocoon before dying at the age of 12 in 1984.

But the disease is curable through a bone marrow transplant if it is detected early enough and before the patient falls ill. Too often, a diagnosis is made after a baby becomes sick. For these infants, even a common cold can be deadly.

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Brooklyn Peters of Virgil, Ont., was 5 months old when she died of double pneumonia in 2002. She had caught a cold two months earlier, and doctors, unaware of the seriousness of her illness, tried everything to help her beat it. Cough syrup, antibiotics and steroids were useless. She was diagnosed with SCID the day she died.

Three years later, when her brother Ethan was born, he was tested immediately and found to have the same disease. He waited months for a transplant in isolation at Toronto's Hospital for Sick Children. His parents were required to wear hoods, masks, gloves and boots to be near him.

Today, Ethan is an active 8-year-old who plays hockey, soccer and video games and is poised to enter Grade 3.

"He's perfect," said his mother, Lori Peters. "He has no medication. He's 100 per cent healthy."

Ms. Peters and Ethan will accompany Health Minister Deb Matthews on Tuesday to Children's Hospital of Eastern Ontario in Ottawa to unveil the testing program, which began last week.

Testing for SCID is the latest addition to Ontario's newborn screening program, which has evolved into one of the most robust in the country since a provincial ombudsman's report in 2005 lambasted it as a "staggering, distracted, if not disinterested" venture.

At that time, Ontario required newborns be screened for hearing and a condition that can cause developmental delay – giving the province the dubious distinction of conducting fewer screening tests than any other jurisdiction in the developed world.

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The province now spends about $11.5-million a year testing for 29 diseases and disorders and estimates the program has improved or saved the lives of 1,000 children in the past six years.

Canada has no national screening program, and in the resulting patchwork of provincial and territorial regulations, some jurisdictions test for dozens of diseases and disorders and others for only a handful.

For the SCID testing, Ontario invested $1-million in new equipment and is budgeting another $1-million annually for screening. About 140,000 babies are born each year in Ontario, putting the cost of testing at about $7 per infant. Treating children with SCID can run hospitals millions of dollars.

"You can't put a price tag on the health and the life of these children, but there is a cost to not doing it," Ms. Matthews said in an interview.

Estimates suggest the disease affects about one in 100,000 people, although Immunodeficiency Canada , which lobbied Queens Park for SCID testing and is now taking the effort nationwide , pegs the number of infants diagnosed in Ontario each year at between five and 10.

Isaiah Drayton, just five weeks old, is one of them. He lives in isolation at Toronto's Sick Kids awaiting a bone marrow transplant that doctors have said may take six months to a year.

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Like most babies with SCID, Isaiah appeared perfectly healthy at birth, until a heel-prick blood test revealed differently.

"I think I cried for several days," said his mother, Barbara Drayton, of Scarborough, Ont., who finds solace in her faith. "I am hopeful. I have to be."

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