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Portrait: Isaac Berkers, family coping

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Other health setbacks meant spending extensive time in hospital at either St. Justine’s in Montreal or the Children’s Hos- pital of Eastern Ontario, with Mom or Dad or both in Ronald McDonald House. After the sur- gery chemotherapy prepared his body for a bone marrow transplant. No relatives matched. He was put on an international donor

a nurse. Another drug wipes out his B blood cells, and he gets a potent mix of antibodies through blood plasma once a month. Finally Isaac’s CD4 count was high enough that he was allowed out in public. “That was a lifestyle change!” says Sandi. Isaac can now attend kindergarten, go to parties, go camping, go horseback riding, enjoy Christmas, and visit a farm.

CANDICE VETTER candice.vetter@eap.on.ca

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Services

When watching Isaac Berkers of Russell, an active and happy six-year-old boy, it is hard to imagine a very rare disease com- promises his immune system, to the point where only a bone marrow transplant two years ago allows him to interact with the world.

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Le CSDCEO est à la recherche de candidatures pour combler plusieurs postes réguliers et temporaires, à temps plein et temps partiel, disponibles dans les écoles sur le territoire de Stormont, Dundas, Glengarry et Prescott-Russell pour combler les postes suivants: ÉDUCATEURS SPÉCIALISÉS, ÉDUCATRICES SPÉCIALISÉES Les personnes intéressées sont invitées à consulter le site Internet du Conseil à l’adresse suivante: www.csdceo.ca Martial Levac, président François Turpin, directeur de l’éducation et secrétaire

list and eventually matched to a woman in Germany. Potential donors are screened by a cheek swab, and a bone marrow do- nation is done by either taking blood (Peripheral Blood Stem Cell) or withdrawing liquid marrow under anaesthesia. Sandi and husband Brian are eternally grateful to the donor. “I imagined this girl in Ger- many. Was her mom sitting be- side her crying, like I was sitting beside Isaac?” Isaac spent 45 days in Mont- real, 35 in a sterile room. “He never cried, he never asked to leave, he accepted every- thing bravely.” The family had help from CHEO with the stay, Ronald McDonald House was where they slept, the hospital provided grocery cards, but there were still plenty of ex- penses. When he "nally came home the Berkers’ daughters lined the street with yellow ribbons and the grandparents were there. But a few months later Isaac su!ered kidney failure (a previously unknown compli- cation of the transplant). “That was tough,” says Sandi. “We thought we were done, but he was sick much more quickly and intensely.” A hospital sta! doctor sug- gested an experimental drug— the last option before dialysis. “It just so happened we saw that doctor, that day,” says Sandi, who formerly worked as

A lot of families end up split apart by health crises, but the Berkers say it has made them closer, although often being without their parents has been hard on their daughters. They all look forward to two big events. From 1 p.m. to 5 p.m. on August 17 at the Russell fair- grounds a celebration and fund- raiser, including visits from spe- cial guests and all kinds of kids’ entertainment will be held. At the end of August the family heads out on their "rst holiday, driving to Cape Cod. Sandi has a mission. “I want to change the way some things are done,” she says. “Because we live at the very edge of the Champlain Health Unit nurses with home care had no pediatric experience. In Ottawa we could have gotten appropriate home care through CHEO.” She asks, “Why isn’t there a reciprocal agreement with Ot- tawa and Champlain?” As a nurse she also recognized discrepancies, such as testing blood with a pinprick versus test- ing blood by withdrawing it from a vein. Having to sign consent forms in Montreal in a language they did not speak and which was largely technical is another problem, for them and the donor. “I intend tomake things better for other families, to pay it forward.” Celebration tickets are avail- able at RJ Pronto, Downtown IDA in Russell and Wiggles and Gig- gles in Embrun, by calling 445- 2032, or available at the gate.

Isaac’s has Chronic Granulomatous Dis- ease, in which immune system cells cannot kill some bacteria and fungi, causing chron- ic, recurrent infections. It a!ects four in one million children and is sex-linked, meaning a female can be a carrier but usually only males are born with the disease. One of Sandi’s cousins, possibly the "rst Canadian diagnosed, had died of it many years ago, and a nephew had the good fortune to have a twin who was a perfect donor match. “The "rst year of Isaac’s life he was mostly healthy,” says Sandi, “but by age two he was getting abcesses, pneumonias, and months of sickness.” After many unsuccessful attempts to shrink a lung abcess with medicatio, deliv- ered through a line from a backback and into his neck to his heart, part of his lung was removed.

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