Leia Norford

I’ve signed up to do 100 skips a day throughout August to raise money for the Children’s Medical Research Institute and help save more kids’ lives.

I’m doing this in honour of my best friend, Kayla, her husband, and their beautiful firstborn son, Xavier.

Kayla had a normal pregnancy with normal testing and normal results. Everything went as expected. Xavier was born, and his beautiful smile lit up the room. His two adoring parents looked at him with nothing but pure love.

At around 4 months old, Xavier started having seizures. This was just the beginning of many more symptoms and a long medical journey ahead.

After many tests, tears, and hospital trips, they found out Xavier had two extremely rare genetic/metabolic diagnoses: Lissencephaly and Adenylosuccinate lyase deficiency (ADSL). It was, heartbreakingly, a terminal diagnosis, with doctors giving him a life expectancy of as little as 6 months.

His life included a full-time feeding tube, lots of medications, and endless appointments, but above all, it was filled with so much love.

This little fighter fought until one week shy of his first birthday, when he gained his wings.

Technology and medical research continue to develop, and new discoveries are made every year, but they cannot happen without funding and support.

I want to help families like my best friend’s have access to support, research, potential cures, and treatments that may one day help their babies live happy, longer, pain-free lives.

There is still lots of work to do, but there is also lots of hope.

Please join me. Share this message. Donate if you can.

Thank you. 🤍