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Marley Ann Guay
September 10, 2008 - December 28, 2008
When we were asked whether or not we wanted to have our daughter Marley as the honouree for 2011, I was overcome with mixed emotions. Of course we wanted our daughter to be remembered and honoured for the beautiful and special person she was, but we would much rather be celebrating her first pee on the potty, her first day of Kindergarten or her 16th birthday. We would rather have her here with our family, fighting with her big sister than having to figure out how to talk about her short, unfinished life with us and how Spinal Muscular Atrophy has devastated our family. We would much rather be bugging my co-workers, family and friends to buy muffin mix or Girl Guide Cookies than having to ask strangers to donate money so that scientists can continue to work on finding a way to stop SMA from ravaging another child. But this is not the reality of life we now lead thanks to SMA. To begin I would like to share with you the story of our sweet child who did not deserve the fate that was dealt to her.
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Marley was an unexpected surprise for our family. During my pregnancy I worried about the impact of having two small children but the minute that Marley was placed in my arms I knew that everything was going to be fine. Marley was such a sweet baby whose bright eyes captivated all who came into contact with her. She was content and liked to be held and snuggled. All in all, she was the ideal second baby. But in many ways she was not like her big sister. She did not have the same strength and movement that her sister had, she seemed weaker and floppy. After numerous visits to the paediatrician, and then a referral to the neurologist we were given the devastating news that Marley was afflicted with a life-limiting genetic disorder called Spinal Muscular Atrophy. There was no hope, no treatment and no cure. All the doctors could tell us was to take her home, love her and create some memories before she died. We were in disbelief. How could this precious little girl be taken from us? It just didn't seem possible. From that moment on we were set on some sort of auto-pilot. Moving in and out of each day, holding on by a thread, not really having any understanding of the journey we were on. The one thing that we agreed on was to let Marley be in control. SMA had taken away so much from Marley we just wanted to give her some say in her short life. It was not going to be up to us to determine the length of her stay...she was in the proverbial driver’s seat as to how much she could tolerate and how she wanted to live out her life. We wanted to make sure that Marley enjoyed her life and that we lived as normally as possible. We tried to make every day, every minute count. Marley was an engaging baby who liked to smile and tell stories to anyone who would listen. Her big sister loved to hold her and help feed her and to chatter away at her. Marley loved watching her big sister and would smile when she would come into the room. She was a true “Daddy’s Girl”—he loved to hold and sing quietly into her ear, and Marley would turn her gaze to his voice whenever he came into the room. Even though SMA was wreaking havoc on her body, Marley was alert and attentive with everyone she came in contact with. She was a true shining star.
At 3 ½ months, on December 27, 2008, at a family Christmas, I put Marley down to rest in a quiet room that had a sculpture of my deceased grandmother in it. She did not wake up from that rest—she was tired. We truly believe that she wanted to leave us before her health deteriorated drastically. She wanted our memories to be about her not about a disease. Marley had chosen her time.
Sometimes I think that is some twisted way we were lucky. There was no escaping SMA. Marley’s fate was sealed but in many ways we did not have to live the SMA life. In the days before her death we were beginning to talk about more aggressive options to improve her quality of life but they were not seen as necessary at that point. We did not live in the world of G-tubes, cough-assist machines, modified car seats, wheel-chairs, spinal fusion surgeries, specialized transportation, physical therapy, or multiple trips to the emergency room. We only made one trip to the emergency room, in the back of a police cruiser where we got to hold our daughter in our arms as they turned off life support and she left us for good.
SMA impacts every family differently but the end is ultimately the same. Whether the journey takes thirty minutes or thirty years it is an exhausting roller-coaster that is filled with exhilarating joy and excruciating pain. Even though SMA is horrible, we would never have given up the opportunity to have welcomed Marley into our family, and to love her. Although she is not here, she is always with us in our hearts.
A cure needs to be found for SMA. While the voices are strong amoung those who have been personally impacted, we cannot do it alone. Please help us fund the research that will put an end to SMA. |
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