Lexi Jane Carson
June 4, 2015 – January 7, 2016
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The day we found out we were expecting was a day we will never forget, and one that was filled with so much joy and excitement. Nine months later and a few days late we got to meet Lexi in person for the first time, and June 4, 2015 has undoubtedly moved to the very top of the list of the best days in our lives. Lexi came into this world, just as she lived her amazing life, very laid back and easy going.
Life with a daughter is something that is beyond wonderful and our days were filled with big smiles and lots of chatter and cuddles. To say Lexi liked her attention is an understatement. We soon realized that Lexi had figured out how to wrap her father and myself right around her tiny fingers. She knew what she wanted and always let us know, her voice was quiet, but was always strong enough to get her way. For three months life was blissful, filled with regular new parent frustrations and extreme love for one tiny human. By the time Lexi was three months old we had noticed a few missed milestones, mainly that she was unable to hold her head up, or even make an attempt to lift her head. We were told by countless other parents, and our doctor that Lexi just is going to move at her own pace, that she was bright and happy and that the motor skills would come in time. Those words only acted as a Band-Aid to hide a gut feeling that something bigger was happening. |
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At four months old we decided to get some tests done to figure out what was going on. I am guilty of over-researching everything, and when it came to Lexi I went over and above to try and figure out what could be causing her lack of movement. Just before her first appointment with her pediatrician to start the testing process, I had come across SMA. I still remember reading the words Spinal Muscular Atrophy on a mom-to-mom blog and my heart sank as I started to learn about SMA. Even though I knew Lexi’s symptoms matched each one listed on every website that explained SMA, I couldn’t let myself completely believe that this could happen.
On October 21, 2015 at McMaster Children’s Hospital Lexi was diagnosed with SMA Type 1, she was 4 ½ months old. We will never forget this day, the day our world crumbled. Seeing our smiling daughter stare back at us as tears streamed down our face, I thought what kind of nightmare are we in? Being told that there is no cure, and no treatment and that likely your daughter will not live to see her 2nd birthday was the biggest punch to the gut. We were told about a clinical trial that was taking place at Sick Kid’s and Lexi would be a good candidate for it. With our world crumbling before us, we went home with Lexi knowing that so many dreams we had for our daughter would be taken away.
With no real treatment options available, we jumped onto the Ionis clinical trial and focused on keeping our hopes high and loving Lexi like each day was the last day. For four months we lived, loved and fought harder than imaginable. We watched Lexi grow and become this wonderfully chatty and attention grabbing little girl. We let Lexi guide us, by doing that we learned her strong love for the water, making bath time a highlight; TV was her biggest guilty pleasure. From watching Sports Centre with Daddy in the morning to binge watching every Baby Einstein movie multiple times a day. On weekends she enjoyed our family hikes around the Niagara escarpment so she could stare up at the trees and every time in between Lexi loved snuggling while listening to her fan.
From October to January life was hectic and scary and wonderful all at the same time. It always blew our minds of Lexi’s ability to be so calm and brave through all of her journey. She stole hearts with one look and a cheeky smile. It didn’t matter where we were, the grocery store, our stroller fit classes, the hospital or just out for a walk, Lexi made sure everyone who met her would remember her. She loved all the attention she would get and she stole the show always. As the seasons changed so did Lexi’s health. As any SMA parent will know cold and flu season is terrifying. Lexi was hit by her first mix of a cold and the flu virus in November and after that we watched her physical strength slowly drain from her. A few weeks later just before Christmas Lexi was admitted into McMaster Children’s Hospital on December 22 with a pneumonia and a cold virus. She fought tirelessly and fiercely for 16 days, on the 17th day, on the morning of January 7, 2016 Lexi took her last breaths and made her way to heaven free from SMA.
To say we are grateful for the short 7 months and 3 days we spent with Lexi is an absolute understatement. Our lives as well as the lives of so many Lexi touched have been changed forever. She showed us how to be brave, how to persevere and how to keep smiling. We are so proud that Lexi was a part of a clinical trial that is proving to make huge changes in the lives of so many children and families with SMA.
We are honoured to know her; be her mother, her father, her grandma, her grandpa, her meema, her gramps, her cousins and her aunt and uncles.
She will forever be the light in our lives and the reason we will keep fighting for a cure.
On October 21, 2015 at McMaster Children’s Hospital Lexi was diagnosed with SMA Type 1, she was 4 ½ months old. We will never forget this day, the day our world crumbled. Seeing our smiling daughter stare back at us as tears streamed down our face, I thought what kind of nightmare are we in? Being told that there is no cure, and no treatment and that likely your daughter will not live to see her 2nd birthday was the biggest punch to the gut. We were told about a clinical trial that was taking place at Sick Kid’s and Lexi would be a good candidate for it. With our world crumbling before us, we went home with Lexi knowing that so many dreams we had for our daughter would be taken away.
With no real treatment options available, we jumped onto the Ionis clinical trial and focused on keeping our hopes high and loving Lexi like each day was the last day. For four months we lived, loved and fought harder than imaginable. We watched Lexi grow and become this wonderfully chatty and attention grabbing little girl. We let Lexi guide us, by doing that we learned her strong love for the water, making bath time a highlight; TV was her biggest guilty pleasure. From watching Sports Centre with Daddy in the morning to binge watching every Baby Einstein movie multiple times a day. On weekends she enjoyed our family hikes around the Niagara escarpment so she could stare up at the trees and every time in between Lexi loved snuggling while listening to her fan.
From October to January life was hectic and scary and wonderful all at the same time. It always blew our minds of Lexi’s ability to be so calm and brave through all of her journey. She stole hearts with one look and a cheeky smile. It didn’t matter where we were, the grocery store, our stroller fit classes, the hospital or just out for a walk, Lexi made sure everyone who met her would remember her. She loved all the attention she would get and she stole the show always. As the seasons changed so did Lexi’s health. As any SMA parent will know cold and flu season is terrifying. Lexi was hit by her first mix of a cold and the flu virus in November and after that we watched her physical strength slowly drain from her. A few weeks later just before Christmas Lexi was admitted into McMaster Children’s Hospital on December 22 with a pneumonia and a cold virus. She fought tirelessly and fiercely for 16 days, on the 17th day, on the morning of January 7, 2016 Lexi took her last breaths and made her way to heaven free from SMA.
To say we are grateful for the short 7 months and 3 days we spent with Lexi is an absolute understatement. Our lives as well as the lives of so many Lexi touched have been changed forever. She showed us how to be brave, how to persevere and how to keep smiling. We are so proud that Lexi was a part of a clinical trial that is proving to make huge changes in the lives of so many children and families with SMA.
We are honoured to know her; be her mother, her father, her grandma, her grandpa, her meema, her gramps, her cousins and her aunt and uncles.
She will forever be the light in our lives and the reason we will keep fighting for a cure.
