The annual ‘Duchenne Awareness Day’, which takes place today, September 7th, always has a different focus. For instance, the day was recently themed around standards of care. So, not only is it helping to raise the public’s awareness of Duchenne Muscular Dystrophy on the whole, but this yearly focus helps to put an aspect of the condition and its treatment in the spotlight.
As part of World Duchenne Awareness Day, one of the main aims is to help educate the parents and families of children with the illness. They can then improve their knowledge of the disease and ensure that they provide the best care possible.
In a very moving post on social media this morning the Join Our Boys Trust said:
“Today is the 7th of September.
It is two months since Archie died.
It is also World Duchenne Awareness Day.
Our small community/Ireland has done more than it’s fair share of advocacy work for his HORRIFIC Disease and raised significant funds for research.
Our battle was lead by Archie, George & Issac.
Our family, friends, neighbours & strangers have battled hard alongside us and done so much.
Our motivation was to save the lives of Archie, George, Isaac & every other soul living with this vile disease.
Two months ago our worse nightmare came true.
Duchenne does what it likes.
Archie is dead and his brothers are broken and devastated. Many more boys will die before a treatment is found.
Every day we visit Archie’s Grave ; Archie was 16 years old .
All we can do is to keep trying; to keep shouting from the roof tops in the hope that someone will listen and help us all.
I have said from day 1; if someone famous, with money and ‘status’, had a child with Duchenne, we would have a cure by now. It feels as though our children have less value than others.
Archie, we miss you every second; we are utterly broken without you. We also know that right now you are running through Scotland with Ben, on your way to Lands End!!
We need a treatment to slow down this monstrous disease.”
You can get involved with the fight against Duchenne Muscular Dystrophy by spreading awareness online, learning about and understanding the symptoms, and donating.