OSCAR

Meet Oscar!

Our journey began before Oscar was even born. At our last ultrasound they noticed he had enlarged brain ventricles and was being monitored for that until he was born 5 weeks premature at 8 lbs. We spent 16 days in the Neonatal unit at the Red Deer Regional Hospital in Alberta, Canada. At Oscar’s 2-month immunization visit we were referred to a physical therapist because Oscar was developing a flat spot on his head. From there we continued going to therapy to work on getting Oscar to stand on his feet and hold his head up. As Oscar got older, we started to work with a speech and language pathologist and an occupational therapist to help with the many developmental delays we were seeing in Oscar.

Throughout this process our pediatrician suggested genetic testing. After multiple tests with the genetics team, on November 15th, 2019 at 3 ½ years old, we received news that Oscar was diagnosed with Smith-Kingsmore Syndrome (SKS). The genetics team didn’t have much information on this syndrome so when we got home, we discovered the SKS Facebook group.

We have learned so much from other families dealing with this syndrome and have really appreciated getting to know everyone and their children.

Oscar has been enrolled in a special needs preschool program since the fall of 2019. He has been working with an outstanding team of teachers and medical specialists including 1 on 1 support with a child development facilitator to help him work on his specific goals in speech and motor skills. We are unsure of what the future holds for Oscar, but we look forward to learning more and being involved in research on SKS down the road.

We have really appreciated hearing other families’ stories. We wanted to share our story to help raise awareness on this very rare condition and to give families hope who may not have answers yet. You are not alone in your journey!

Written by Harrison & Shanna, Oscar’s parents