This week Owen Schuler would have celebrated his first birthday — if he had not been born with SMA. This week his parents would have thrown a party filled with laughter and joy. But, instead, this week is a time of mourning for his sweet parents because Owen passed away at only five-months-old.
I know the SMA statistics. 1 in 40 people unknowingly carry the SMA causing gene… 1 in 6,000 new infants born with SMA each year… Life expectancy of between one and two years, 80% dying before they reach 18 months. BUT, it is still devastating to learn of a new baby's diagnosis, another child who had such a short fight, another family in so much pain. This week I learned that SMA claimed the lives of several more babies: a set of twin baby girls, Carynne and Sydney, and a six-month-old named Lilly.
And so, this week, I find myself continually thinking of Owen. I think of Hannah Jean, Mollie, Eli, Cisco Jr., Sawyer, Paige, Sylvia, Samantha, Bentley, Andrew, Thisbe, Noah, Lilly, Carynne, Sydney…. I think of all the children who deserved a longer life. And I think of their parents who deserved more time with them. I don't know why they all were taken so soon.
It is a strange place to feel that at only 17-months-old Gwendolyn is outliving her buddies. She is not the oldest by any means; there are many amazing babies who have grown to be courageous children of four, five, even older, living with SMA Type 1. They inspire me and give me hope. But, they are not the norm. And so, I wish I knew of a special thing we were doing or that the parents of the five-year-olds were doing. I would scream it from the mountain tops to help other parents and would be determined to continue doing it for Gwendolyn. But I know we are doing exactly the same things as other parents — both those with long survival rates and those taken too soon. We fight for Gwendolyn just as they fought for their children. There is no magic trick. There are things that help, but even those are not foolproof and will only last so long. No child will beat SMA, not even Gwendolyn. I know that. But, some get to fight a little longer. And, I know, that extra time is a precious gift.
Happy Birthday sweet Owen, I wish I could have given you the gift of time.