New Year

New Year’s 2020. Auld lang sine. Time long past.

Wow, Duchenne made 2019 seem insufferably long to me and my family. Less than 250 days have gone by since grandson Hayes’ dreadful diagnosis. Nonetheless, much in the way of accelerating a learning curve for a life’s plan has transpired during that short but impactful time.

Diagnosis. Family huddles. Self-study. Similarly situated parents meetings. Parent Project Muscular Dystrophy. Treatment decisions. More self-study. Clinical trial choices. Totally supporting Hayes with joyful companionship. Stimulating him with intellectual and academic activities. Staying as joyful as possible. Medical reading. Networking with those who care. Raising public awareness. This blog. Much prayer.

Now, we must move forward in 2020. Recent developments in the realm of genetic transfer technology seem quite interesting. Private-public funding for research and family support will always be a challenge.

No cure, yet. No desirable long-term treatment, yet. There is a lot of work in front of us. But looking forward sure beats living in the not so long past.

With more progress during this New Year, may Duchenne soon be considered a time long past.

Kindly,

Papa in Tennessee