Patient Support & Stories
Alastair Fund
The Alastair Fund was created in 2004 in memory of Alastair
Mackay who fought a valiant battle with cancer. His wife Brenda
created it, so that “Alastair can continue giving joy to others.”
He led an extraordinary life and will be remembered for his wonderful
humour, warmth and irrepressible joie de vivre.
The Alastair Fund provides funding to families dealing with financial
strain due to illness from PID. It is available to families with
a child registered as a patient at Toronto Sick Children's Hospital, Montreal Children's Hospital or British Columbia Children's Hospital.
Families can access financial assistance for transportation, overnight
stays, food, parking and other critical needs through the clinic
or social work department. Families with no other options available
often use it. back top
Resources and Referrals
CISociety strives to provide resources, referrals and information
for family members. Some materials are available in both English
and French.
Working with others, we provide ongoing updates on treatment information
and links to PID based organizations worldwide.
 Resource List
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Kids Picnic
Each year children born with the most severe form of PID (Severe
Combined Immunodeficiency) gather for one day where they can forget
about their illness and hang out with friends they have met at the
clinics. It is held at a location closed to the general public for
that day. Wendy Shama, a social worker at the Hospital for Sick
Children says “Families with PID feel isolated and are willing
to travel great distances for this event. They feel safe knowing
that everyone at the day is facing the same issues.” Families
isolate themselves in fear of contact with common colds and viruses.
They remain vigilant and limit family members to exposure of society
at large. Events such as the Kids Picnic provide an opportunity
for social interaction and emotional support.
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Why CISociety makes a difference
Brooklyn Peters’ story,
as told by her mother Lori
October 29, 2001 was the happiest day of my life. It was the birth of our second, beautiful daughter, Brooklyn. She was seemingly healthy but by two months of age, Brooklyn had a clear, runny nose. Her doctor assured me there was nothing to worry about. Within a month she had started coughing and after a few days, I took her to our clinic. The on-call doctor performed a very thorough examination and recommended cough syrup. Shortly thereafter, on February 13, we flew to Florida for a nice relaxing vacation and ended up in a living nightmare. For six days, Brooklyn’s cough continued. We had no choice but to take her to the nearest Emergency Room.
Click here for Brooklyn's story continued ...
David’s Story as told by his father
David, our third child, was born in February 1992 a happy and seemingly healthy baby. David got the first of many colds and ear infections when he was about six weeks old and, consequently, was put on antibiotics. We were concerned that David was sick all the time and was repeatedly on antibiotics for colds and ear infections. Then when David was five months old he got very sick. David had developed pneumonia and was hospitalized. It was only then that a specialist diagnosed David with Severe Combined Immune Deficiency Syndrome (SCIDS), a life threatening Primary Immunodeficiency.
Click here for David's Story continued ...
Baden’s Story
as told by his mother, Joanne Klein
Baden was born on February 6, 2003. We were so happy to complete
our family with a little boy to join our three year old daughter. The
doctors told us that Baden was healthy and we went home. At nine
days old Baden started coughing, and wouldn’t feed. Baden was admitted to the local hospital for what we thought would be a short
stay. We did not realize that our lives were about to change forever.
As it turned out, this cough was the first of many infections. By the age of four months Baden was on his sixth major infection and
hospitalization. His most recent infection had forced the doctors in our
community to send him to the local children’s hospital. When he
arrived, there was a whirlwind of tests trying to figure out what infection he had. After a full day of tests he
was diagnosed with PCP (pneumocystis carinii pneumonia). The doctors told us that PCP only affects those
with severely compromised immune systems, and by getting this illness Baden was showing them how serious
his illness was. They told us that his immune system problem was severe and, like a “bubble boy”, he would have to be put into reverse isolation to protect him from infection. As he was moved to the reverse isolation unit, a search began to find new bone marrow to cure Baden.
Click here for Baden's Story continued ...
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