What I know now after 10 years of Duchenne affecting my family.
Life with Duchenne is a roller coaster.
Hope is constant.
Duchenne does not define my son's life, my son define's his own life. Duchenne is just something we deal with.
It's really OK to question the Doctors and understand what they are doing and why they are doing it.
Sometimes I know more than the Doctor treating my son. I will need to provide Duchenne education to Doctors smarter than me.
My son wearing a Medic Alert Bracelet may save his life.
What I didn't know on December 31, 1997
Before starting any medication you need to take some baseline tests and perform monitoring tests in six month intervals.
All medications come with side effects, we just need to know what they are and what needs to be done to counteract them.
My daughter would grow up to be a supportive and caring friend and sister.
I would meet parents and families from around the world and across the country that would become my lifeline when I felt as though I was drowning in paperwork, medical tests, and sometimes it felt like insanity.
My son would take on a daily basis:
Vitamin E with Selenium
Co Q 10
Metfomin and Fosamax once a week.
My son would still be mobile at 15 and be one project away from becoming an eagle scout.
My daughter, son and I would meet US Senators and US representatives to advocate for all Duchenne families to create a standard of care and advance research.