Julian is a sweet, social, funny, chatty boy who charms everyone around him, especially his friends at Rotary Flames House.
As a young child, Julian was always active, but when he was about three years old, his family noticed he would stumble often and tire easily. He was referred to the Alberta Children’s Hospital for tests through the Neuromuscular Clinic. During his Kindergarten year, through genetic testing at the Metabolics Clinic, he was diagnosed with a rare disease – Giant Axonal Neuropathy (GAN). It means the axons on his nerves block nerve signals, affecting his balance and muscle tone. He is one of less than 100 known cases in the world.
By the time Julian was in Grade 1, he used a walker to get around and today, he uses a wheelchair. Because he requires around-the-clock care including help at mealtimes, transferring to and from his wheelchair, and with administering medications, his family is grateful for respite care at Rotary Flames House.
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“We can drop him off at Rotary Flames House knowing he is in the hands of caring, highly-trained people who understand his medical needs and that he is in a place he truly loves to be,” says his mom, Megan.
There he can spend time with friends doing crafts and playing air hockey while his parents take a break to rest and recharge. Even though Julian has been able to go camping, swimming, and even sit skiing from the top of a mountain in Jasper with his family despite his mobility limitations, his favourite activity by far is having a sleepover at Rotary Flames House, says his mom.
“While he may never be able to go to a regular camp for kids, this experience brings him the same joy and excitement. It is something he looks forward to months in advance and he feels at home there,” says Megan. “He loves these opportunities, and we know they wouldn’t be possible without the incredible staff and the support of people in our community. We can’t say thank you enough.”
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