08/20/2013 09:03 EDT | Updated 10/20/2013 05:12 EDT

Ontario 1st province to add 'bubble boy' screening for newborns

A boy with a rare and treatable "bubble boy" disease who was saved by a test after his family lost an older sister to the disease is welcoming Ontario's newborn screening announcement for the illness.

Lori Peters and her eight- year-old, Ethan, are joining his sisters at the Children’s Hospital of Eastern Ontario in Ottawa today as Ontario Health Minister Deb Matthews announces a new life-saving screening for newborns in the province.

Ethan has Severe Combined Immune Deficiency or SCID, a group of rare and potentially fatal conditions in which the immune system either lacks key immune cells called T-lymphocytes or the cells don't work properly. It's also known as bubble boy disease after David Vetter, a boy from Texas with a type of SCID, who lived for 12 years in a plastic, germ-free bubble.

Since Aug. 12, newborns in Ontario have been undergoing screening for SCID during standard heel prick test bloods. Ontario is the first jurisdiction in Canada to include this test. In the U.S., several states have being doing it for a couple of years, according to the SCID internet homepage.

Infants with SCID appear healthy at birth, but develop severe infections within the first few months of life, such as pneumonia, meningitis or bloodstream infections, Newborn Screening Ontario said. Without treatment, SCID is fatal.

The treatment is a type of stem cell transplant. Enzyme replacements may also be given.