Written by Melissa
Dr. R. Ellen Magenis, who (along with Ann C. M. Smith) discovered the micro-deletion of the 17th chromosome that became known as the Smith-Magenis Syndrome (SMS), passed on Tuesday, February 4.
Her obituary can be found
here. Upon reading it, I realize Dr. Magenis was remarkably brilliant and incredibly driven to be among the best in her field. As a woman of her time, she must have faced many challenges in her career, but her tenacity and dedication to helping others led to just as many successes.
From what I understand from the SMS community, Dr, Magenis was well loved and she committed much of her time to families struggling with the diagnosis of and care management for their children with SMS.
I wish I had met her. With her degree in zoology, I know Andrew would have loved her. I am grateful for her work. Without it, we would not have learned of Ariana's diagnosis so early in her life and, therefore, would not have built the village that will now be best prepared to care for her in the way she needs and deserves.
In my heart, I am still miserably saddened and terribly angry that Ari has SMS. I still desperately wish it didn't exist in her - or in any child for that matter. In my mind, though, I know that life has a way of shaking things up every once in a while. And that as long as we have OPEN hearts and OPEN minds, we can persevere through any challenge. That's what I hope
The A Team is - Ari's perseverance, Asa's perseverance... my perseverance.
It's a day of mourning for the passing of Dr. Magenis - and a reminder of my repeated mourning for
the life I wished for my daughter and for the life I thought we'd have together as mother and daughter. Still, it is also a day of gratitude for the life and work of Dr. Magenis - the for
the life that is Ariana's, as well as the creation of
The A Team.
May days like today be filled with far more gratitude than grieving!
