Jonathan was born at 26 weeks’ gestation, roughly 14 weeks early. At 1 lb. 5 oz. he required immediate care. He would stay in hospital for the first five months of his life. During that time, Jonathan required various support systems.
Unforeseen complications resulted in damage to his eyes, due to a surplus of oxygen. The doctors considered various ways to try to repair the damage, but methods used for seniors weren’t effective, and Jonathan would soon lose his full vision.
While Jonathan was fighting his tiny battle, he had a bout of meningitis. The result was a total loss of hearing. At first, this was hard to detect. Jonathan would sense the vibrations in the various tests, and would respond as if he could hear. His parents would soon find out that he was now deaf blind.
Jonathan has been involved with Special Needs programs through his schooling, and works with an occupational therapist. His after-school activities with the YMCA keep him occupied until the early evening, allowing his siblings some ‘normal’ time at home. He loves the water, and finds peace in swimming.
During the summer, Jonathan did not have access to this same program. Without his routine, he would become agitated and restless. With limited senses, routine is a very important part of his life.
Jonathan’s mother, Colleen, was introduced to Variety, The Children’s Charity of Manitoba through his case worker at the Society for Manitobans with Disabilities. Working full time to support the family, and with Jonathan’s father away from the work force, they simply did not have the funds to arrange for summer programming. “We didn’t know where to go for support,” said Colleen. “We didn’t know there were different resources.”
With three older siblings, summers were always a challenge when school was out. Variety was able to help fund a summer camp for Jonathan, which he has attended over the last few years.
“He is able to go on excursions. They go to parks, they go to ball games. It is so good for him to have his Monday to Friday routine. He isn’t stuck inside all day.”
Busy with work, and caring for their family, Colleen and her husband have not had much spare time to take in many of Variety’s other events. “When you are busy keeping up, you don’t always know where to find support,” she said. “We are thankful for the help Variety is able to provide us. We want to share our story so that other families might learn of resources they had not been aware of.”
Submitted by Chris Mahussier
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