Keeping the faith for Parker
Canadian boy will return to Italy for treatment of his rare disease
By Mariella Policheni
Parker DesLauriers, 2, will be returning to the San Raffaele Hospital in Milan in May for further testing.
Parker, with his blond page-boy hair cut and the energy typical of children his age, is afflicted with a rare disease known as Severe Combined Immunodeficiency Disease (Ada-Scid) a disease without a cure that makes him vulnerable to virus, bacteria, and fungus.
“However, there are experimental treatments available, like the one administered by Doctor Alessandro Aiuti at San Raffaele in Milan, which we had our Parker undergo with the hope of seeing some positive results,” says Parker’s mother Tracy DesLaurier. “It will take a lot of time, maybe years, before we know for sure if Parker is cured, but in May we’re heading to Milan to learn, through a series of tests, if the treatment works.”
Severe Combined Immunodeficiency Disease (Ada-Scid) is so rare that in the past 20 years only 15 children have been treated for it at Sick Children’s Hospital in Toronto.
We wanted to try Doctor Aiuti’s treatment, which has proven to be successful on many other children,” adds DesLauriers. If he succeeds in overcoming the disease, Parker will be able to lead a normal life, he’ll be able to attend school, interact with others and live like a normal child, whereas for now, we have to limit his interactions, his time outdoors, and we have to provide a home environment that is as sterile as possible.”
Parents Tracy and Kevin DesLauriers are full of hope for their son Parker who has had to live a sheltered first two years of life under extreme safety measures.
“We have always been positive and continue to be so,” says Tracy DesLauriers, “with test results from gene therapy, which ended last September showing that the number of lymphocytes is increasing although they are obviously not at the level they should be. This is encouraging news for us, although we remain with our feet planted to the ground, so that we don’t get overly optimistic.”
To be near Parker, his parents have had to quit their teaching positions and move to Italy for seven months, facing many challenges.
“The language, being away from our families and our home, and the financial challenge of not having worked in months has naturally affected our situation,” says DesLaurier. “But we have friends and family who help us, and in Milan we’ve come to know and appreciate Doctor Aiuti’s team, who have been marvelous, as has been all the hospital staff. We wanted to try out this treatment with the hope of guaranteeing a normal life for our son. We’re confident and are making this second trip to Italy with much hope – with the hope that everything is moving in the right direction.”
In a show of support, family and friends of the DesLauriers have organized a fundraiser, Golfing ‘Fore’ Parker, to be held June 1 at Four Seasons Golf Club (www.2golf.ca) at 1 p.m.
Anyone wanting to buy tickets, donate prizes, help organize the event, or who wants to get further information, can write to firstname.lastname@example.org. For donations visit the blog at http://www.scidada.blogspot.com.