I thought I would never find happiness ever again

BY KRISTIN ZWICKAU
CHARLESTOWN, MASSACHUSETTS

It was October 2017. I thought I would never find happiness ever again following our daughter’s diagnosis of FSHD. She was six at the time, and we had never heard of the disease before. Now it is a part of our everyday life.

It was overwhelming. During the early days post-diagnosis I kept thinking:

How do we go on? 

What other medical punches will we face? 

How will she fit in and have friends when she physically can’t keep up? 

And the list goes on and on … round and round. All of these questions and more still linger and weigh on us daily, but two years later we have learned to make them background noise and not our main thought process.

We are not willing to let FSHD rule our lives. We have to make it a part of our lives and fight to come out on top. Who knows where our efforts will lead? But if we don’t dive in feet first to learn, adjust, and fight, then we are letting FSHD win.

With all we have on our plate – two demanding careers, an almost-nine-year-old who needs so much more than the everyday kid stuff – how and why are we involved with the FSHD community? The answer is simple: We are the patients and caregivers affected, and who cares more than we do? The FSHD community needs to believe that this is solvable. Be involved. Band together.

We’re the only ones who can make it happen. 

To us, this is solvable, and the time to be involved is now! We have biopharmaceutical companies working on this day in and day out. We have clinical trials now, not just natural history studies gathering basic knowledge. We have scientists working in labs, doctors dedicated to the cause, and the community all working with the FDA to streamline what we need to get drugs over the finish line.

However, success in all of the above hinges on the involvement of the community. In the past two years we have seen so much progress toward a therapy. Involvement means working toward solutions, even if not all of them are known yet. It’s better to work toward something than to simply allow FSHD to run its course.

We made the commitment not to sit back and let FSHD determine our daughter’s future. A puzzle only gets solved if people care and are determined enough to find the right pieces – and fit them together. We have the pieces to the puzzle. We just need enough people who care to do their part in solving it, and who would that be if not those like us whose lives are affected daily? Sitting by and waiting for others to solve this for us is not a solution.