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Ontario, Canada
3 years old
December 1, 2021

Mya

Mya is a silly, fun, loveable girl who loves her little sister Ayla (aka “Eyes” as she likes to call her). Mya loves to be outside no matter the weather. She enjoys swimming, music, animals, spending time with her family, reading books and her dance class that she attends weekly. But most of all she loves to sweep and clean the house. Mya has come a long way in her 3 years. We noticed early on that she was not hitting the typical milestones most kids were at her age such as crawling, walking or talking. Mya didn’t start crawling until she was over 1 year old and walking at 2 years old. At 1 year old, we started a private physiotherapy as we were on a wait list for Ron Joyce and wanted to help her the best we can as soon as possible. Soon after we were on a wait list for speech as well, which we also went privately since COVID prolonged our waiting period. It wasn’t until this year, Mya got into Ron Joyce Centre for speech, physio and occupational therapy. Originallywe were told that she may be behind with her gross motor skills due to having "hyper mobility". After several tests, including genetic testing, in September 2021, Mya was diagnosed with SYNGAP1. As parents we always thought maybe Mya was just developmentally delayed, but this clarified that that was not the case. With this information we were told that she will most likely develop Epilepsy as well. At the time we didn’t think this was something we needed to worry about, but with plenty of networking with other parents, researching and observing, we got Mya retested and she was diagnosed with Epilepsy in November 2021. Mya continues to work hard everyday trying to tell us her wants and needs and pushing her physical limits to the best of her abilities. Mya loves going to daycare two times a week as she is pretty social. Mya has difficulty sleeping, and is often awake at 1:30am for the day which makes it difficult to get through the day. This is common with SYNGAPIANS. We are hoping one day she will be able to sleep through the night. Mya has a hard time keeping up with her peers. She is still working on her balance with going up and down stairs, as well as hopping and jumping. Mya will continue to work hard on these skills and I’m sure one day will be able to do so. Mya’s smile can light up a room, and she loves when people cheer her on, including herself! Mya is very proud of herself when she accomplishes anything, and always celebrates with a “yayy!!” as she claps her hands. She loves and takes pride in identifying colours, letters, and counting to 10. We are so proud of our little girl and everything she has already overcome in her short 3 years.

We continue to hope for the best for her and looking forward to watching her grow.


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