What a week it has been! Étienne’s story was shared by Metro News, CBC, and Radio-Canada. Elizabeth Fulton, who took his newborn photos, organized a very successful fundraiser that raised $3000. We’re so grateful to her, the generous vendors who donated prizes and everyone who participated in the raffle. Despite living in isolation, Étienne is enveloped in love by his family, friends, community, and people from across the country.
I do want to make one thing clear. Étienne’s condition is called Severe Combined Immune Deficiency. It is not “bubble boy disease”. The term “bubble boy” refers to a real boy named David Vetter, who was born with X-linked SCID in 1971 and had a sterile chamber that protected him from viruses, bacteria and fungi. At that time, the immune system was not that well understood. There was so little known about SCID. Things are much different today. Advances in screening and diagnosis of SCID, stem cell transplantation, gene therapy and enzyme replacement therapy have made SCID treatable.
Étienne is not a bubble boy. He does not live in a bubble. He lives at home. The only time he is in a plastic bubble is when we go inside the hospital to the isolation unit. By plastic bubble, I’m talking about a rain cover for a stroller that many parents have and use. He’s in his stroller under a rain cover for a grand total for 5 minutes a week. The rest of time, Étienne is at home, out on a walk, going for a drive, or on a sleigh ride in the backyard or park.
The reason that Étienne is not in living in a bubble is because of newborn screening and advances in treatments for SCID. Twice a week, Étienne receives peg-ada injections (enzyme replacement therapy). Enzyme replacement therapy is one of the treatment options for his form of SCID, ADA deficiency. The peg-ada injections are working to protect him until he has gene therapy. He is still very immunocompromised, but these injections add some safety to his life. We are so grateful to his medical teams at CHEO and Hospital for Sick Children in Toronto. Because of the advances in identifying, understanding and treating SCID, Étienne is able to live outside of a bubble. That said, if John Travolta wanted to tweet about him, we would welcome that!
We are thrilled that Étienne is in our life. We adore him. Although isolation can be difficult, we are so lucky to be able to spend our days with him. He continues to be free of fevers and infections. Please keep him in your thoughts and prayers.