Let's get Emma what she needs!

This is Emma’s story:

Emma is a kind hearted, loving, intelligent 7 year old girl. Just like every other child, her dreams is to be a ballerina. Her eyes light up as big as the sun while passing the ice rink at city hall in Kitchener. Her biggest wish this summer was to go to the beach. These things seem pretty basic. You would never think these are things you would tell your child she can’t do. Nevermind trying to find a way to explain why without breaking their heart. This is the case for Emma. She was born with Spinabifida. Which means her spine failed to develop causing extensive nerve damage. At 7 years old, she has had 6 surgeries starting with the one to close the large hole in her back, only 2 hours after birth. She also had surgery to repair her bladder after being burst by the nurse at a routine test to check the functions of her bladder and bowels. The remaining surgeries were done to try and repair her feet. Emma has no feeling from her knees down and cannot walk. Her situation is unique and doctors could not tell us for sure if she would walk. We had hope after the surgeries and some time that nature would take its course and maybe she would gain feeling and possibly walk. At our last appointment in Toronto, we were given the bad news. Our hopes will not be a reality. Things had not gone as planned and unfortunately Emma will not walk. There is nothing that could have been done to change the outcome. My heart breaks everyday. If I could give her my legs so she did not have to struggle through life, I would without a second thought. Each day I struggle to make it through without breaking down. There’s a park right across the street from us. It killed me not being able to take her there once this year. She is too big for me to lift alone and the slide is her favourite thing. There has been no one to help when she wanted to go to the beach or splash pad. The list goes on and on. Many people may think there is a lot of services and help out there. The truth is, If Emma was fully disabled she would have more services and opportunitiez available to her. There is so much that just doesn’t make sense at all. The battle never ends. There are things you just wouldn’t believe. Minor example is the argument with her previous school over indoor and outdoor shoes. I tell this story because I still can’t believe this was an issue.  Kidsability provides the services for special needs children in the Cambridge, Kitchener and Waterloo District. They are supposed to provide services for helping families understand and deal with raising a special needs child. For Emma, this has been the furthest from the truth. None of the recommendations they have provided have been in the best interest of Emma. Before transferring her to St Bernadette where she would have a regular school day with regular children, she attended the school recommended by Kidsability. Everyday she came home in a miserable mood. She was held back from recess with the special needs kids. These children need full time care. They are not able to take care of themselves and will never become independent. The only assistance Emma needs is for changing her. Everyday I think of what’s best for her. This brings us to now. I never thought I would ever say “I can’t do it alone” This is the case. Without a vehicle I can’t provide her with the services best suited for her. I struggle to find ways to get her to Toronto for her appointments. Recently I had to reschedule an appointment we had been waiting 5 months for. I cried myself to sleep that night. We don’t have any help or support and I no longer can do it alone. To most a vehicle is a luxury, but for us it’s a necessity. I applied for a wheelchair Van grant. After October there will be no grants available. The grant will cover a fair portion of the Van but if I am unable to cover the remainder of the balance, undortunately the grant will be lost. This is our last chance and only hope. I can’t express what this means to us and the impact it will have on our lives. I just want to be able to provide the best for her. To open up opportunity and give her confidence to succeed in the harsh world we live in. Our biggest struggles are yet to come and she deserves so much more. I am hoping to see a light at this long dark lonely tunnel surrounding us. Your help may not change the world but it will change the world for her.  Please help give me the ability to provide the best care and treatment as well as opportunity that she deserves more than what life has handed her.

Written by Wendy Haley

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Organizer and beneficiary

Haley Power 
Organizer
Cambridge, ON
Wendy Haley 
Beneficiary
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