Meet Our Newest PPMD Adult Advisory Committee Member: Jen Petrusko Bauer, manifesting carrier

There are moments in life that take your breath away. When you are truly in awe of the power and grace of others.

 

About a year ago, we put our a call to our community asking for adults living with Duchenne and Becker to consider applying to be a part of our Innagural PPMD Adult Advisory Committee (PAAC). We were overwhelmed by the response we received and were thrilled by the passion, expertise, and qualifications of the applicants. Among those who were selected to serve on the 2015 PAAC was an amazing man named Matt Petrusko. Matt quickly showed himself to be a proud leader within our Duchenne community and made many lasting contributions to our policy efforts and community resources. We tragically lost Matt this Spring. And while our PPMD community and his fellow PAAC members searched to understand the loss of our friend, we unexpectedly gained another. In connecting with Matt’s family at the time of his death, we got to know Matt’s sister Jen. As you will see, Matt and Jen were extremely close and shared a very special bond. But they also shared a unique connection to our Duchenne community as Jen is a Duchenne carrier who manifests physical weakness — and Jen asked whether she could help be a part of Matt’s legacy by launching her service to our PPMD community by serving out the remainder of his term with the PAAC. Yes! 

 

It is my absolute privilege to introduce Jen Petrusko Bauer. Truly. Over the coming months she will be serving alongside our PAAC members and will also be working with our PPMD team as we formalize new outreach efforts to our carrier community. Please help us welcome Jen to our PAAC and watch for more information about opportunities to be involved in programs for our Duchenne and Becker carrier community. To Jen, Matt, and the Petrusko family — thank you for sharing yourselves, your time, your expertise, and your hearts so generously.

Meet Jen Petrusko: 

My first blog post is dedicated to my brother, my friend and my hero Matt Petrusko. Matt was taken from me on Sunday,  May 10, 2015. It was the day that changed my life forever. It was the first day of my life without him. My Matt fought Duchenne Muscular Dystrophy with such bravery for over thirty years. He battled that wretched disease until his last breath on this earth.


Matt taught me so many things in his short life, but the most important thing he taught me was how to fight.  In 2010, I was diagnosed as being a manifesting carrier of Duchenne Muscular Dystrophy. It meant that the muscle weakness I was experiencing was a result of me having the same DMD gene as my brother. After finding out this news, I was devastated. I was having a hard time participating in life. I would go to my parents house everyday and cry. The second I started to get upset Matt would tell me that it would be ok.  For months, I would hear my brother saying if I can do this you can too. He said he knew my life would be harder but there is nothing you can do but fight.

Finally after a long six months, I started to believe him. At that point, I decided I would fight this muscle weakness and not let it stop me from having a normal life. I began IVF treatments to have a healthy child.  During the entire process my brother was my source of strength during many of the tough days.  I found a card he wrote to me the day after his death.  He wrote that he prayed for me and my baby every day during IVF and my pregnancy.  We had a healthy girl and Matt was so happy for me.  He loved my Kate so much.  He saw her daily since I am unable to lift her and needed my mom's help to care for her.  Kate laid in his arms as a baby, hugged his legs when she was able to stand, and got him his slippers when she became a toddler.


My daughter had the privilege of knowing her Uncle Matt for two years, seven months, and three days.  I will never ever let her forget him.  At this point in my journey, I have significant muscle weakness and have difficulty doing many tasks most people would take for granted.  I am still mobile but I have no idea what the future holds for me.  Matt helped me realize I can't waste precious time and dwell on the what-ifs of the future.  After almost four months of grief, sorrow and regret it's now time for me to use my energy for something positive.

Last month, I had the honor of joining the PAAC group for the remainder of my brother's tenure.  It is now my job to fight for myself and my brother's amazing legacy.  I look forward to meeting and getting to know all the amazing individuals who are also fighting this terrible disease.

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