One Tough Kid!

Evan off to play Baseball

Evan is almost 12 years old who has Spina Bifida, Hydrocephalus, 22q deletion and Epilepsy. To say that he is resilient, strong and has overcome barriers since birth is an understatement. Evan wears AFO braces to walk and a wheelchair when he experiences fatigue, is catheterized and often deals with urinary tract infections, has made multiple trips to the ER as a result of constipation, and has had multiple surgeries. He’s one tough kid!

Due to the time and extra care that has been required to raise Evan, his mother Connie hasn’t worked full-time since he was born. Evan has had to miss school many times because of appointments, surgeries, etc. so it was a relief for Connie and the family when they got connected with SMD. Jeannie Nickel is a Children’s Service Coordinator who works out of our Morden office and has worked closely with the family for years. “It’s such a pleasure to work with this resilient family,” she says. “I’ve been able to connect the family with SMD supports and resources as well as inform them on relevant information other charities have to offer so they can explore multiple funding options.”

Evan is a huge fan of hockey and was overjoyed when he received a Sledge from Variety the Children's Charity of Manitoba. He now plays Sledge Hockey through our Recreation & Leisure program each year. This winter was the first ever Christmas Sledge Hockey tournament and Evan’s team, ‘The Manitoba Sledge Hammers’ ended up winning silver. “Sledge hockey has helped build so many friendships and relationships for Evan,” Connie states. “We can’t thank Bill, Jaylene and Jeannie enough for introducing Evan to the sport.” Evan also received a new iPad a few years back through the Katie Cares Foundation and was also recently gifted a bath chair from the Elks Association.

Evan at Sledge Hockey

Connie adds, “Jeannie and SMD are amazing. We are able to communicate regularly and she’s able to connect/educate us on the many services available. We’ve been able to receive funding to assist with travel/transportation costs for extended care when surgeries come up, respite, and so much more.” To learn more about respite funds, etc. that SMD clients can access checkout the Government of Manitoba’s Children’s disABILITY Services website.

When asked what message she would like to get out to others, she says, “Don’t Give Up! If you don’t know the answer to a question, talk about whatever disability you want to know more about. Communication is so important.”