Our journey with Duchenne began in July 2012, just weeks before our son's 2nd birthday. Since then, our life has changed drastically and taken us in a new direction. One that we were not expecting or thought we could handle. Brendan is a true blessing. A sweet, loving, and energetic little boy! Although he is in the "grace period" of DMD, his INCURABLE and FATAL diagnosis altered the course of our family's lives forever. Devastated and eager to care for my son, I left my beloved position as a school counselor. Anxiety medication became an unfortunate part of my life and the terms IVF and PGD became integral terms in my vernacular when considering the thought of expanding our family. Each day is filled with an incredible amount of sadness and trepidation. Ever since Brendan's diagnosis, I have truly experienced some of the darkest days of my life. It was hard to accept that the normal we knew was never going to return. It is important to highlight that DMD impacts the ENTIRE family.
My children are only 18 months apart and truly are the best of friends. The bond they share is amazing and indescribable! When I allow myself to think about the day we must explain Brendan's condition to each of our children, I am overcome with such powerful, negative emotions. No parent should ever have to explain what a fatal and incurable disorder is to their children. No child should ever have to bear the burden that they are only going to live a short while. No sibling should have to comprehend that their best friend will leave them far too soon. No parent should have to bury their child. Ever. These sad realities are part of all DMD families. They are daily, heart wrenching, and the ultimate weight on one's shoulders. Because we do not want to let DMD win and take another life, we have committed our lives to advocating and fundraising in order to make strides to END DUCHENNE! We seek to provide Brendan with the bright future that he deserves. All children with DMD should be rewarded the same!
Please help the DMD community and allow helpful drugs into the hands of these deserving and desperate children. Their lives depend on it. Please and thank you!