Family Support

Julian and his Family’s Trial with P.I.

By: Dana Ewachow

julian

Gina  shows me a scrapbook she’s made of her son Julian when he was two years old. This scrapbook is different from the average family album; the photos are adjacent to long lists of medications. In the photos, Julian is smiling sweetly, his cheeks puffy from a reaction to the drugs. The scrapbook was made to commemorate his battle with primary immunodeficiency. Gina admits that she did it for Julian, who is now eight years old. “He has the right to know,” she says. “Look at where he’s been. Look at where he’s at now.”

When Julian was 18 months old he was diagnosed with the rare immune condition CGD (Chronic Granulomatous Disease). He was admitted to Sick Kids Hospital for seven months to conduct a multitude of tests. After a tense two-hour meeting with a board of doctors, it was decided that he would be set up for a bone marrow transplant. His then seven-year old sister, Alyssa, was a complete match. This was a lucky break for the family, because there is smaller chance of having complications with a transplant with a sibling donor than with an “outside” donor. On September 8th, the day of the transplant, Gina found herself running between the 2nd floor to see Alyssa and the 4th to see Julian.

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A Small Charity With A Big Impact

A Look at RN Brenda Reid and The Alastair Fund

By: Dana Ewachow

Brenda

Brenda Reid is the Clinical Nurse Specialist for the Immunology and Allergy clinic at Toronto’s Hospital for Sick Children. She’s also considered an official champion by the Immunodeficiency Canada for her work with patients with PI (primary immunodeficiency). Reid admits that her PI patient relationships span across her career. She’s currently on her second generation of patients; she currently sees the sons and nephews of men she had taken care of when they were teenagers. “It’s a privilege to be a part of these peoples’ lives,” she says.

Primary immunodeficiency is an umbrella definition for genetic conditions in which the immune system is either defective or missing. There are over 250 genetic disorders that could be classified as PI, though many people who suffer from PI could suffer without diagnoses or treatment. Treatment of immunodeficiency has changed dramatically in recent decades. Reid admits in the past, few people suffering with PI lived past thirty. In the 1980s, the survival rate of those suffering with PI was 30-50%. Now the survival rate is over 80%.

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The Luck of the Draw

Everyone Wins at Toronto’s Capital Connection’s Raffle

By Dana Ewachow

The reception for ACG’s (The Association for Corporate Growth) Capital Connection event took place in Ripley’s Aquarium in downtown Toronto on Tuesday November 11th. Capital Connection, where the best business leaders in North America mingle, sponsors one charitable organization each year; this year, Immunodeficiency Canada was the fortunate beneficiary. As a member of Immunodeficiency Canada, I helped set up our tables – one stacked with informative pamphlets for our cause, the other advertising the prizes for our raffle – on the bottom floor next to the Dangerous Lagoon. Out of the corner of my eye, I could see sharks circling in their tanks. In the other corner, I watched the business elite circle the reception, slick in grey and navy suits. I couldn’t help but be intimidated.

My anxiety disappeared when they approached our table with curiosity. They scoped our amazing selection of prizes: an iphone 6, dinner at Los Colibris, prime seats to sports games, a travel package worth $2000, and the ultimate prize of a one-year lease of a Porsche. Piqued by the possibility of a good deal and the taste of competition, they hovered by the raffle tickets. When we mentioned the money was for a good cause, the bottoms of the raffle bags started to fill. To no one’s surprise, the bag for the Porsche Cayman was the heaviest.

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