Body, Mind and Soul

We have a promising update from my oldest daughter about grandson Hayes and his clinical trial examination in Cincinnati earlier this week. Good marks.

His numbers for hip flex and rate of walking are improved. Blood work presents no new anxieties. We do not know whether Hayes is in the placebo control group or experimental medicine variable group; nonetheless, improvement regardless of source or reason is very much welcomed.

Early on, it was decided that a holistic approach would be best for Hayes. It is believed that the holistic approach being taken with Hayes is accounting for his physical improvement and associated self-confidence.   

Organic food and abundant Mega 3 vitamins are the norm for his eating and nutritional health. The boy robustly plays with other kids and with big kid Papa. We regularly visit interesting places and undertake new adventures.  

We are keeping his already excellent mental acumen very sharp with nearly daily study and discussions relative to math, science, and geography.  Laughter is constant, among all of us together. A loyal and playful pet dog helps. This is all good stuff.  

Duchenne is complicated, hence, no cure yet despite at least 25 years of serious searching.  However, recent advances and discoveries in genetic transfer technology are raising hope for the Duchenne community.

Emphasis on the connection between Hayes’ keen mind and willing body is the correct focus, certainly for us and most likely for any number of other Duchenne families.

Vigorous continuation of neuro-muscular disease research, including the search for treatments or even the retreat of Duchenne, is receiving greater attention and funding from both the private and public sectors. Add prayer to the mix and we most assuredly should have a promising formula for ending or at least mitigating the effects of Duchenne not so far into the distant future.

Maintaining positivity with body, mind and soul - together with quickly advancing medical science – will invariably keep hope alive until ending Duchenne becomes a reality.   

Kindly,

Papa in Tennessee