(1/10) A few weeks ago my son, Anderson, was diagnosed with Duchenne Muscular Dystrophy. This is a progressive muscle wasting disease that decreases his muscle function.

(2/10) By 5 he will lose ⅓ of the muscle function he was born with. By 10 he will be in a wheelchair. By his mid-teens he will lose the use of his upper limbs and also go on a respirator. By his late teens or early twenties his heart muscle will stop working.

(3/10) I’m sharing this because today is World Duchenne Awareness Day (WDAD). This is a genetic disease that impacts one gene. In Anderson, there is a point mutation on one exon. It should be a T, but instead it is a D.

(4/10) Consequently, Anderson cannot produce dystrophin, a protein that repairs muscles. When you and I exercise, we experience countless muscle tears that then repair themselves and actually make us stronger. Anderson’s tears lead to scar tissue and calcification.

(5/10) Each year on WDAD there is a different theme. 2020’s is Duchennes and the Brain. Dystrophin is also missing in the brain and can lead to behavioral challenges and learning difficulties.

(6/10) Here is what you can do. First think about what is truly important to you and live life to the fullest - make a bucket list and see it through.

(7/10) For years we had been putting off doing tough hikes. The weekend after his diagnosis, we loaded Anderson in his old baby carrier and hiked to the top of an Adirondack peak. It wasn’t a particularly tall mountain, but he loved being “king of the world” at the top.

(8/10) Second, be inclusive. We worry that Anderson will have trouble making friends because he won’t be able to keep up, will eventually be in a wheelchair, and will start to look different. Be kind to all types of people.

(9/10) Third, help educate people about this disease. Share some posts about it today!

(10/10) Finally, if you are interested, donate to @ParentProjectMD or @MDAorg . There is no cure for this disease, and research has been severely limited due to COVID. We need your help.