Currently DMD is a fatal disease. Families, Parents are fighting for their son's life. A freedom our boys wish to be free from this disease- independence to live on their own, to marry and have a family. Which we are pleased to learn many ARE living this life now. That means something is working properly. Proper care and treatment is working for many. Thankfully.
Yet, unfortunately and sadly, what may work for some may not work for others. And we never know whom it works well for until the moment we sadly loose our son's from complications of DMD. We have to remember that every boy is different. So for many and no matter what we are blessed to have our son's in our lives.
Many have gone before- left us. Some peacefully in their sleep while others may had to suffer during this terrible disease. IT is up to us to figure out what is best for our son's and it is up to us how hard or how much we fight for our son's. And all fight long and hard.
Tim was only a month short of his 25th birthday when unexpectedly he passed away from complications. Having heart failure is unfortunately one of the attached to the disease...but then there is pneumonia or other complications. Tim suddenly had double pneumonia and sepsis.
I am grieving- more so now than the first year. But even during our grief, we can find a ways-special ways to remember our son's by...In memory of them...to honor them.
In memory of our son's, I am working on ways to build a real-literate Memorial wall...join us as we as grieving parents work on honoring our son's.
Meanwhile, we have an online MEMORIAL WALL- if your son has passed away from complications of DMD and you would like your son's memory to live on...post his stories, photos and videos on our website: www.RememberingTimothy.org/
We also have a group for GRIEVING PARENTS:
To read more about my journey since loosing Tim: