North Bay Couple Called to Marathon
of Caring
an article by Andre Picard for the Globe
and Mail
Pair whose son died will run to help his
now-ailing doctor build an HIV-AIDS hospice for families
Monday, April 18, 2005
ANDRÉ PICARD
PUBLIC HEALTH REPORTER, The Globe and Mail
Running a marathon can be a tough slog -- months of sacrifice
and training culminating in 42.2 kilometres of knee-pounding,
gut-wrenching running.
But Christine Fortin, who along with her husband,
Christian, will line up with thousands of others on the start
line of the Boston Marathon this morning is not the least bit
daunted by her participation in one of the sport's premier events.
The Fortins are not professional athletes. Far
from it. But they already survived a far more harrowing endurance
test than the Boston Marathon and its legendary Heartbreak Hill
-- caring for a child infected with HIV-AIDS.
"Patrick was sick his whole life and never
complained, not once. He always gave 100 per cent," Ms.
Fortin said of her son, who died in November of 2002 at age
23.
"Compared to what he went through, and what
we went through as a family with him, you can't say a marathon
is difficult -- not at all."
But it has proven to be a catharsis and a calling,
a way of honouring their son and his caregivers, and to leave
a lasting legacy.
As they run today, the Fortins will raise tens
of thousands of dollars -- it's hard to say how much exactly
because they can barely keep up with the steady flow of cheques
to their home in North Bay, Ont., as word spreads.
All the money will go toward the construction
of Canada's first hospice for mothers and children with HIV-AIDS.
The 12-bed home, part of the respected Philip Aziz Centre, is
to open in August, 2006, in downtown Toronto, when the city
will play host to more than 20,000 delegates attending the International
AIDS Conference.
"The face of AIDS has really changed, and
that's why there's a need for a hospice like this," said
Ravni Salminen, executive director of the Philip Aziz Centre.
"Women who have AIDS, and sometimes have children with
AIDS, have very little support and a lot of stigma to deal with,
and they need respite. That's what we will provide."
Although the Fortins -- he is a real estate broker
and she's a piano teacher -- come from a comfortable background,
they understand fully the importance of getting a break from
providing non-stop care, and that's why they have thrown themselves,
body and soul, into the project.
It all begins, of course, with Patrick, who was
born a severe hemophiliac, a condition that left him with no
clotting factor in his blood, and at risk of fatal bleeding
from small bumps and bruises.
The blood products that allowed him to live left
him infected with HIV-AIDS. Patrick was diagnosed at age 6,
making him one of the youngest victims of Canada's tainted-blood
tragedy.
There was no specialist care in Northern Ontario
so Patrick was treated by Susan King at the Hospital for Sick
Children in Toronto, one of the world's foremost experts on
pediatric HIV-AIDS. She also became a powerful advocate for
her patients, most of whom, like the Fortins, chose to keep
their child's diagnosis secret because of the stigma surrounding
HIV-AIDS.
Despite his condition, Patrick lived a normal,
happy-go-lucky life, playing tennis and pursuing his passion
for singing. Ms. Fortin still weeps at the memory of her son
singing Panis Angelicus.
In high school, as the tainted-blood scandal made
headlines, the teenager decided to go public. He also became
increasingly ill as the virus ravaged his immune system and
attacked his brain.
He required constant care from that point until
he died at 23. His dream of being a pediatrician, inspired by
Dr. King, was unfulfilled.
The death left a terrible void in the Fortins'
lives. "When Patrick died, I needed to find something to
keep myself active and to fill the hours I used to spend caring
for him," Ms. Fortin said.
She decided to get healthy, and hired a personal
trainer, who introduced her to running, a sport she embraced.
On her husband's 50th birthday, Ms. Fortin's present to him
was to drag him out for a run. He, too, was hooked.
The couple, whose marriage had been strained by
the demands of constant care-giving, grew much closer. They
made it a habit to run five kilometres to the cemetery where
Patrick was buried -- "and then we had to run back again,"
Mr. Fortin quipped.
Then, early last year, an eerie confluence of
events occurred that would mark their lives anew.
First, Ms. Fortin was invited to speak to the prestigious Governor-General's
Leadership Conference about the family's experience living with
HIV-AIDS in a small town. Next, a local doctor called asking
for help counselling a family whose child was terminally ill.
Then, out of the blue, came a call from Dr. King, saying that
she was suffering from amyotrophic lateral sclerosis, or ALS
(also known as Lou Gehrig's disease), a degenerative and incurable
condition.
"I felt so fit and healthy and free, all
of a sudden, my whole life was filled with death and dying and
AIDS once more. It left me reeling," Ms. Fortin recalled.
The Fortins invited Dr. King - by then in a wheelchair
- to spend time at their cottage. Dr. King, in turn, invited
the family to a fundraising dinner held in her honour in June,
an evening of tributes that raised more than $100,000 for the
AIDS hospice.
The Fortins were touched that the pediatrician,
while gravely ill, found the time and energy to help her patients,
and decided to do their part. They tapped their new passion
and decided to run the Venice Marathon as a fundraiser - Venice
because Patrick had always wanted to go there.
They dubbed the adventure "Race for Susan."
They wrote personal letters to friends, including pledge sheets
with the letters, and the money poured in. They raised nearly
$10,000, all of which went to the hospice. (The couple pay their
own expenses.)
The Boston Marathon is the second leg of their
new journey. Next will be the Toronto Marathon in September,
where they will be joined by friends and colleagues of Dr. King.
Dr. King, who also was a marathoner, said in an
e-mail interview -- ALS has left her unable to speak or use
her hands -- that she is touched by the couple's efforts.
The Fortins know that when they run today in Boston,
they will not cross the finish line first. Neither will any
of the half million spectators lining the route know their mission.
But they know that the money they raise for the HIV-AIDS hospice
and the attention they draw to the cause back home in Canada
are ultimately more important than a trip to the winner's podium.
"Since Patrick died, we wanted his life to
be a victory," Ms. Fortin said.
"We weren't sure how to do that, but Susan King gave us
a purpose. We can hardly wait to see her dream come true when
the hospice opens next year."
