We would like to introduce our son Markie, age 13. He is an awesome teenager from Fargo, ND. He also has Smith-Lemli-Opitz Syndrome.
Our first clues that Markie had SLOS came after he was born. The shape of his hands, his pushed up nose, the heart condition they diagnosed before we left the hospital, and the mild ptosis in his eyes.
As Markie grew, he also did not hit growth/developmental milestones like our other kids did and struggled with some of his medical issues. He has had lots of challenges – but fortunately has overcome many of them and learned to live with the rest.
It’s amazing that it’s been about 10 years since he was diagnosed. He’s now in middle school – 7th grade. His is doing well although he can no longer play competitive sports due to his heart condition. Fortunately he was able to join the local curling club and enjoys curling with his friends and cousins.
ANNUAL MARKIE NOAH MITE & SQUIRT JAMBOREE:
Once a year, we honor all kids with SLOS by hosting a hockey jamboree in Fargo, ND to benefit the SLOS Foundation. This year (April 2016) we held the 4th Annual Markie Noah Mite & Squirt Hockey Jamboree and have found it is a easy way to raise money for SLO research.
For those who read this, who are just beginning your SLOS journey… take heart. Our best advice is to take things one day at a time… one symptom at a time. Fix what needs fixing and celebrate the littlest of milestones! Try not to compare your child’s growth & development to standard growth & development charts. Rather, compare their progress to how far they’ve come. Growth comes slow with our kiddos. Be patient and keep your pediatrician in some form of contact with a SLOS specialist. You’ll meet some amazing people along the way – forming friendships you’ll cherish and meeting families who seem like they dropped right off of your own family tree. The journey you walk on while raising a child with special needs may begin a little scary and uncertain. But you’ll fast find friendships you would have never had and community program & early intervention services that will help you to find the best path for your child’s future. We believe God chooses carefully when placing a Special child. We are blessed and honored he chose our family.
(Markie & his sisters)