N.B. `bubble baby’ to undergo experimental gene therapy in Halifax Breaking News
By The Canadian Press
MONCTON, N.B. (CP) – Baby Katlyn DeMerchant’s whole world is her hospital room.
In a story reminiscent of the movie ‘The Boy in the Bubble,’ just one bad germ could prove Katlyn’s undoing. She has virtually no immune system.
“She’s not allowed out of this room,” mom Daisy Gallant says from Katlyn hospital’s room at the IWK Health Centre in Halifax.
“She hasn’t been out of this room in seven months. We have to don gloves and masks just to be in here, so we haven’t even been able to touch her. She’s basically living in a bubble. Her hospital room is her bubble.”
But there is hope for the 13-month-old girl, who has been chosen to undergo an experimental gene therapy at the respected National Institute of Health in Bathesda, Md.
The call to get on a plane to the United States could come at any moment.
“We’re all packed,” Gallant, of Moncton, says of her child, herself and her partner Johnathan DeMerchant of Centreville, N.B.
The family got the word Friday that Katlyn will be one of the few in the world to undergo this type of gene therapy. The baby was diagnosed with a severe combined immunodeficiency, known as SCID, adenosine deaminase, or ADA, an extremely rare genetic disorder.
Her options were a bone-marrow transplant or a type of gene therapy for which very few patients qualify.
“Then we found out that with what Katlyn has, the chances of a bone-marrow transplant going wrong is very high. It’s just too much of a risk,” her mom says.
Things were looking bleak, but then came word that the Maryland hospital was willing to try the experimental gene therapy on Katlyn.
“This is very exciting because now we can see just a little bit of light through the tunnel,” Gallant says. “I’m very excited for her to go there.”
Gene therapy attempts to correct genetic diseases at the molecular level by fixing what’s wrong with the errant gene. It was first tried at the U.S. hospital in 1990 when doctors used a virus to deliver the correct ADA gene in two child patients. Both are doing well, but this form of treatment remains very much experimental.
The expensive treatment is paid for by the health system, by research grants to the hospital and public donations to Katlyn’s parents, who can’t work while they help care for their daughter.
The Katlyn DeMerchant Trust Fund continues to collect donations at the Scotiabank in Florenceville.
linkback url: http://www.hfxnews.ca/index.cfm?sid=20707&sc=89