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Jovi was born December 25th/2017. Our little Christmas bundle of joy! Jovi developed like any typical baby. It was around 6 months that we started to feel like something wasn’t quite right. Jovi wasn’t hitting milestones like she should have been. She wasn’t able to roll over or sit independently. At 9 months old we saw a paediatrician and were referred to the Children’s program at Wascana Rehabilitation Centre in Regina for physiotherapy. At 15 months old she had an MRI, genetic blood work and we were referred to a Neurologist in Saskatoon. Jovi has never been able to walk or talk. In June of 2019 we meet with the Neurologist. She ordered some additional blood work and had mentioned to us that she thinks it could possible be Rett Syndrome.

On July 29th, 2019 we headed back to Saskatoon for an appointment. The Neurologist came into the office, asked us how things were going. Then told us, Jovi has Rett Syndrome. She went through some information with us and asked if we have any questions. We of course, not knowing too much about Rett syndrome, didn’t ask too many questions. She gave us contact information for the Saskatchewan Rett Syndrome Assosiation. It was nice to finally have answers but it was so heavy on our hearts.

Jovi is tube fed, has seizure, scoliosis is non verbal and non ambulatory. She loves going to school. She is in Grade 1. She has started to use an eye gaze device and loves to play games on it. Jovi is a happy girl who loves music and all the attention on her. She has the most infectious laugh and her smile will brighten your day. She loves her older sister Jorja and little brother Eli.

This journey hasn’t been easy but we are determined to make Jovi’s life as beautiful as we possibly can. We will continue to be her advocates. We are thankful for our Family, Friends and Rett syndrome community to help us navigate this life. Jovi is an incredible human being; she’s brave and daring and has to fight every day to win a battle against Rett syndrome.

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