Willow Abigail Cannan

My name is Amber Olsen. Before May 9, 2016, my family was just like yours. My husband, Tom, and our three beautiful daughters went about our days like anyone else, and our biggest worries were ordinary things like what we were having for dinner and getting our taxes in order.

That all changed when the doctors told us that the developmental delay and regression we noticed in Willow, our youngest daughter, were due to a rare condition we had never heard of before: Multiple Sulfatase Deficiency (MSD). The diagnosis was like a bomb, and our life exploded. All of our hopes and dreams for our then 2-year-old Willow suddenly came crashing down as we were told that her condition was terminal and there was no cure in sight. They predicted that she would not live past the age of 10. 

When a bomb goes off, most only think about the damage and shock of the initial blast. Even more heartbreaking for me has been the fallout, the shrapnel that has shown itself over time. Every day is a new loss with a progressive condition like MSD. First, it was Willow’s ability to walk. Now, it has taken almost everything from her — her ability to swallow, express herself, and hold her head up. I used to think that Willow was only in pain when she was crying, but now I see other signs, like when she begins shaking or stretching her legs. As MSD tightens its grip, I try to make Willow as comfortable as possible and create positive experiences together, like visiting the aquarium and safari animals. She loves lights and music, and listens to audiobooks to fall asleep. I try to cherish these happier and more peaceful moments with her while I can. 

When we learned about the grim prognosis of MSD back in 2016, I couldn’t and wouldn’t accept that fate for my daughter, so I fought back. I created the United MSD Foundation to raise funds for a gene therapy treatment and tried to learn everything I could about MSD and genetics, despite my limited biology background. I pushed as hard and as fast as I could for advances in science and policy, and although we have made significant progress, the necessary developments take more time to come to fruition than Willow has left. I embarked on this advocacy journey to save my daughter. Now, I have had to accept that this work may save future Willows, but not mine. 

My family and I do our best to navigate this impossible situation, and we all manage this continuous loss in different ways. For my two older daughters, Kylee and Jenna, seeing Willow struggle is painful but, unfortunately, normal for our household. The process of losing a child puts tremendous strain on any relationship, and has led to me and Tom going our separate ways. The shrapnel is far-reaching and ever-present, and the hardest part of it all is knowing what is happening to Willow and not being able to protect her from it. I am thankful for the help of nurses who come to our home and attend to Willow’s needs, like putting on her shakey vest to prevent pneumonia and using a suction tool to clear saliva from her airway. Willow requires around-the-clock care as her condition worsens, and the physical and emotional drain of seeing Willow suffer is devastating. This is the reality for children and families impacted by MSD so long as a treatment is not developed. 

In the context of the suffering that children with MSD endure, doing nothing is not acceptable. Inaction is an action in and of itself. It is the active decision to ignore the lives of these children who cannot speak up for themselves. As long as I live, Willow’s voice speaks through me and refuses to be ignored.

Written by Dominique Alexander