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Catherine Erin Barnes

Daughter, sister, crusader, courageous fighter. Born on Feb. 17, 1981, in Toronto; died on April 9, 2014, in Toronto, of complications from a bone-marrow transplant, aged 33.

Born with a rare blood disorder, Catherine was a miracle child for her loving parents, Mary and John Barnes, and her big sister, Danaca. No one knew how long Katie would live, and each day was a challenge. But with the unflinching support of her family, and with her determination and strength of character, she took on many difficulties and never gave up.

Because the disorder, known as Diamond Blackfan anemia, affects production of red blood cells, Catherine suffered from extreme fatigue and weakness and heart problems. But her joie de vivre was unquenchable – and her smile would light up a room.

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She wanted to live life to the fullest and to overcome any obstacles. She wanted, fiercely, to be independent. She had no disabilities, simply different abilities.

Passionate and creative, Catherine enthusiastically embraced activities from swimming, horseback riding, ice skating and bowling, to pottery making, piano playing and singing. She developed deep relationships with her extended family, including her brother-in-law Peter and her three adored nephews, her many friends, and her dogs and cats.

Her driving force was an indomitable spirit and deep courage. After high school, Catherine enrolled in the early childhood education program at Seneca College (King campus). When she was able to work, she did so at a variety of businesses in the Bolton and Brampton areas. Customers of Home Depot in Brampton and Zehrs Markets in Bolton will remember her sparkling smile and cheerful service.

Catherine also did extensive volunteer work and fund raising for many causes including the Canadian Cancer Society, Caledon Meals on Wheels, the Catholic Women's League (Bolton chapter) and, most importantly, the Diamond Blackfan Anemia Foundation.

Part of her approach to living with DBA was to learn as much as possible about the disorder and to connect with others who suffer from it.  She joined support groups at Toronto General Hospital and The Hospital for Sick Children, and online; attended Camp Sunshine in Maine; and made herself available to many families whose children have DBA. She offered compassionate support and vital information to parents, telling them that they had to allow their children to do things because they could not be "bubble wrapped."

She also took part in any clinical trial or research project the doctors suggested might help to find a cure. In the autumn of 2013, Catherine decided to undergo a risky bone-marrow transplant, which she realized had only a 50-per-cent chance of success of alleviating the symptoms of DBA.

She understood and accepted the risks and, with her trademark brave determination, made her choice. She knew that even if the transplant failed, it would help further research that might end the suffering of others. Her family knew that without the transplant, Catherine wouldn't have been able to bear much more. This doesn't make their loss any easier, but when she died they knew she had made her choice, and was happy. And they can't be sad about that.

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Everyone is dealt a hand in life and Catherine played hers courageously. She went all in, every day. This gentle, very special, little titan was a hero to her family and friends.

Stephen Messinger is a long-time friend of Catherine's family.

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