CBC News video: Étienne Blais of Ottawa needs SCID treatment in U.S.

Kamil Karamali of CBC News in Ottawa shared Étienne’s story.

Click to watch (and share) the video on Facebook:cbcetienne

Read the full CBC story.

An Ottawa family is trying to raise $30,000 for travel costs as they seek life-saving treatment for their infant son, who suffers from Severe Combined Immune Deficiency (SCID) — popularly known as “bubble boy” disorder.

SCID involves 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 disorder after David Vetter, a boy from Texas with a type of SCID, lived for 12 years in a plastic, germ-free bubble.

Etienne Blais of Ottawa, now seven months old, has an incredibly weak immune system due to the rare disorder, making him vulnerable to bacteria and viruses. His parents can’t take him out of the house without literally putting him in a plastic bubble.

“The shock kind of came in waves. The more we understood about it, the more we realized how serious it was,” said Etienne’s father, Pierre-Julien Beaulieu-Blais, “I’m working harder than I ever have.”

1st baby tested for disorder

The parents must keep their home incredibly clean because a simple cold could kill the baby boy.

Etienne Blais, bubble boy from Ottawa

Etienne Blais, seen here in his first few months, was born with Severe Combined Immune Deficiency. His parents say the only permanent treatment exists in California. (Photo supplied by the family of Etienne Blais)

​Blais was the first child to be detected with SCID as part of Ontario’s new screening program, which started in August 2013, according to Anne Phem-Huy, a pediatrics and disease specialist at the Children’s Hospital of Eastern Ontario.

Ontario was the first province in Canada to screen for the disorder, which affects one in every 100,000 newborns.

Blais is currently undergoing treatment but it is only temporary, his father said. The only permanent treatment is called gene therapy, still in its experimental stages.

“It’s been around for about 20 years and its definitely been refined over the years, and there have been more promising results in the last couple of years,” said Phem-Huy.

Treatment only at UCLA

Blais’s parents debated whether gene therapy was necessary, but now they believe it is the only way to go.

The family is set to travel to Los Angeles where therapy exists at the University of California, Los Angeles (UCLA). The university will pay for the expensive treatment, but the family must pay for the trip there plus the stay in L.A.

Beaulieu-Blais said they hope to raise about $30,000, as the therapy could take a couple of years.

To donate to the family’s cause, you can visit their website at babyetienne.com.

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