Marie’s Story
Nine-year-old Marie had a traumatic start to her life when her mom, Elizabeth, went into labour at just 29 weeks into her pregnancy. Marie was born in distress having been without
oxygen for over an hour. She spent the next two months in the hospital and finally came home “tiny but strong,” weighing only 3 lbs. 12 oz. Although Marie appeared normal, she cried continually, and it wasn’t until age two that a doctor diagnosed her with cerebral palsy and dystonia.
As a result of the cerebral palsy, Marie has extremely tense muscle tone, is unable to walk and needs a wheelchair for mobility. Dystonia causes her muscles to contract involuntarily, resulting in repetitive or twisting movements and, in Marie’s case, a distorted spine and excruciating pain.
Since the day of that diagnosis, doctors have tried to find a medication to ease her pain, but it wasn’t until recently that anything has been able to help. “Since infancy, it has been unbearable to watch my precious daughter screaming in pain throughout the night,” says Marie’s mom, Elizabeth. “It has been heartbreaking not being able to make her comfortable.”
Elizabeth describes Marie as being smart, funny and very appreciative of what others do for her. She is also one of five children in a single-parent family. “With five kids on my own, I don’t always have the time to do everything for everyone. Marie seems to appreciate this and doesn’t let her disability hold her back from trying to help out and being a good big sister,”
adds Elizabeth.
Easter Seals has provided funding for a walker and a commode for Marie and is currently in the process of funding a stair lift that will enable her to get up to her bedroom when she wants and, ultimately, improve her quality of life. “Because of her seating issue, Marie currently has to lie on a mattress in the living room until someone can help her up to her room. A stair lift will let her get upstairs when she wants all on her own. I can’t thank the donors enough. If you are thinking of giving to Easter Seals, please know families appreciate it so much,” says Elizabeth.