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Violet


Violet’s medical journey began during a routine ultrasound when we were just 20 weeks pregnant. We were so excited to see our growing baby and to find out we were having another little girl but at our follow up appointment a few days later our worlds changed. This is when the term Cerebellar Hypoplasia was introduced to us, a neurological condition where the cerebellum is much smaller than it should be. We were told that our baby’s cerebellum was measuring four weeks behind where it should be, placing it in the less than one percentile and causing concerns about her growth and development. Everything felt so surreal in that moment. You always know that there is a possibility that something like this could happen but it never feels like it will be your story - until it is. Our family doctor was amazing during the whole process and was able to get us into JPCH immediately the next week. This is where they confirmed our little girl’s cerebellum was in fact measuring smaller, which is rare in itself, but it was also the only abnormality that they could identify. We were told typically any variants that are identified in the brain like this are accompanied with other abnormalities but all of Violets other development was on track with no other concerns. This is when the countless appointments, scans, tests and monitoring began to determine a potential cause, outlook on life, and to watch her growth.


All prenatal tests came back normal, making it even more difficult for physicians to provide us with a quality of life for her. A prenatal MRI was then completed at 32 weeks, which confirmed a smaller cerebellum and no other abnormalities. At this point all we could do was sit and wait, which made the remainder of the pregnancy stressful to say the least, but we did our very best to remain hopeful – the fact that doctors couldn’t tell us how life would be for her provided a silver lining; she will write her own story, and for the rest of our pregnancy, we took time to enjoy all the beautiful moments with our daughter. Leading up to her birth, the NICU team at JPCH reached out to let us know that they would be taking her immediately after birth to closely monitor her, conduct further tests and complete another MRI. And although they were very comforting and sympathetic, I remember tears streaming down my face as they told me this news, as I knew that I would only get a short amount of time with Violet after birth.


Then on October 24, 2020, Violet arrived quickly in the early morning hours, and amid the chaos of her speedy entrance, we were able to steal a few more snuggles with her; she was absolutely perfect - our hearts felt full, and family complete. This was also the start of her nine day stay in NICU. Nothing prepares you for the NICU. I was told she would be going and I still struggled so hard with this experience. The monitors, cords, needles and countless tests. All of which, to ensure her safety but still so hard on a parents heart. Violet was seen by several specialists and physicians during her nine day stay, passing all tests with flying colours. Without knowing of her condition, she was like any other newborn. An MRI was once again completed, and confirmed a fully intact cerebellum that was still measuring in the less than one percentile but no other abnormalities identified. Specialists suggested that we would have to wait to see her growth and development, and for the genetic results to determine any potential causes. We had to accept the unknown - we were told that it could have little to no impact on her quality of life or it could immensely impede how she lives on a day-to-day basis; there was no way to determine other than waiting to see. During Violet’s stay in NICU they also noticed another cause for concern; her oxygen levels and heartrate would drop when she was in a deep sleep, causing concerns with her breathing, and leading to her being discharged with at-home oxygen for infant sleep apnea. She would have to wear the oxygen for the majority of the day and night until another sleep study would be completed. It felt daunting at first but that quickly faded, as we were so excited to bring our daughter home and introduce her to her family and friends.


Over the next few months we enjoyed our newborn baby girl. Aside from the oxygen tank we carried around with us, Violet was like any other baby and was the sweetest little girl. It wasn’t until around three months when we started to notice that she still could not hold her head up during tummy time, and since she was being closely monitored by a number of physicians, they immediately referred her to the Alvin Buckwold Childhood Development Program. Violet was diagnosed with low tone in her core, and began PT, OT and SLP at the centre shortly thereafter, and was also referred to the Early Childhood Intervention Program, and assigned a consultant who would visit us regularly at our home. Around four months, she was also referred to an ophthalmologist for strabismus in both eyes to monitor and determine corrective action. And finally, after four months Violet was able to stop the at-home oxygen after completing a sleep study at JPCH, making life a little bit easier for getting around.


From that moment on, Violet would continue to progress with her milestones at her own, slower rate, with her gross and fine motor skills being the most impacted. As she grew, her playful, determined personality continued to shine, and we knew that nothing could stop this little girl.


By one year, we still had no further diagnosis or cause identified but Violet continued to impress everyone with her strength. She was able to sit on her own at this point and roll around, and loved playing with her big sister. Shortly after, she started army crawling, then full on hands and knees crawling, climbing stairs, and pulling to stand. Just short of her second birthday, Violet also took her first steps in a walker. It was pretty magical to watch her face light up with pride as she figured out this new skill. And in the fall of 2022, Violet underwent strabismus surgery to correct her cross-eye. She was such a champ through the whole process and doctors were happy with the results.


Then in early 2023, after all potential causes of her condition were ruled out, Violet was diagnosed with Ataxic Cerebral Palsy and a Global Developmental Delay. After waiting what felt like a life time for a diagnosis, it was bittersweet and heavy on the heart. A diagnosis to us did not change anything or define her, we already knew that based on the journey that led her to where she is today, but it definitely brought up past feelings and emotions that we had to fully embrace. At 2.5 years old, she can’t yet independently stand on her own or walk, BUT Violet is smart, and silly and extremely kind, and we could not be more proud of her. The skies the limit for Violet and we know she has so many more surprises for us. I say this all the time now, but she truly has opened our eyes to this beautifully-unique world of inclusion and we have become her biggest advocates. If you are ever in her presence, her smile and warm heart make your day brighter and your heart fuller. We just know Violet is going to change the world and we are so excited to watch her do it!





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