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 PI. It is available to families with a child registered as a patient at Toronto Sick Children's Hospital, Montreal Children's Hospital, Alberta's 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.

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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 PI based organizations worldwide.

Resource List

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Kids Picnic

Each year children born with the most severe form of PI (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 PI 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.

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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.

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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.

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Toni's story, an adult with CVID

My body held a secret for a very long time even though clues had abounded all my life in the form of frequent health problems. I had a lot of fatigue, recurrent respiratory infections, and viral illnesses lasting weeks and often months. For weeks on end, I was unable to sleep more than an hour or two at a time because of pain. Yet, no one realized there was an underlying cause.

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