Whether or not I consistently recognize it, Jesus did die for us so that we who believe may live a new day knowing God is with us.
I also have faith in the strong belief that God, by way of sound medical science and talented researchers and dedicated medical providers, with adequate financial support, will lead us to a cure for Duchenne, in this generation.
Such is my prayer, today and everyday.
Kindly yours,
Papa in Franklin
Hayes just turned eight years old, today. Time surely flies.
This year and next could be his last standing on his own. We are making the most of his ability to run, jump and play with his friends now because later will be so different.
Where he may be short on time walking, Hayes remains particularly gifted for the long game. He now is learning Spanish, has developed an interest in World War II (perhaps brought on by action in Ukraine), and continues way ahead of a normal pace in math and science. And, a cool kid, to boot!
Thanks, God and family, for these last eight wonderful years with such a delightful and talented grandson.
Being eight is a good thing.
Kindly,
Papa in Franklin
This weekend, built from scratch a raised flower bed in the backyard. Scheduled 6 hours and a $120 budget but completed in 10 hours well under budget. Cedar sides which smell good. L-shaped to fit a corner of the yard that needs some TLC.
Spent weeks planning. Shopped for materials in the local big box store. Was there an hour. No one offered to help. Brought materials home, and son Jonathan spent Saturday afternoon digging out dead shrubs that did not survive the December 22-23 below zero freeze which freed me up to construct the box. He recommended a different tiered elevation of the box which I fortunately incorporated.
Sunday, daughter Ashlee and husband Tom brought grandson Hayes over as is our weekend tradition. She suggested that I orient the box at a slant in the corner of the yard for better viewing. We did, and she is right.
Meanwhile, Hayes played with the hand tools, giving special attention to the old school, yellow folding measuring stick. With his sharp mind, Hayes took a diameter measurement of the charcoal grill then correctly calculated the circumference of the round Weber grill. Amazing, at nearly 8 years of age!
With the box nearly done, I experimented with putting caps at each junction where 2x4’s vertically met 1x6” cedar boards. Each my son, daughter and grandson vetoed the look, so we removed the caps which, in turn, gave Hayes a new opportunity to hammer nails into them to make odd shapes, to his delight.
What does this have to do with Duchenne Muscular Dystrophy? A lot, methinks.
Construction and proper placement of the box took teamwork. The opinions of collaborators resulted in a nice result. We all had fun pitching in. With a helpful and available tool, Hayes reminded us just how smart he is at such a young age. We now have a nice result sitting out in the back yard.
Careful planning. Getting the right stuff to proceed, whether or not outsiders help. Collaboration, from different angles of the challenge. Being willing to adapt as the project evolves. Being smart. Enjoying the journey along the way. Getting a good result.
As I and others enjoy blossoming shrubs in that raised flower bed this Summer, I will respectfully suggest that recipe above to construct a box will also work well as we continue our search for a cure to DMD … certainly cannot hurt!
Kindly yours,
Papa in Franklin
What is better than kindness? Kindness exponentially repeated.
Last time, I wrote about the wonderful generosity of folks who contributed to a Go Fund Me account for grandson Hayes to help with fundamental home improvements and transportation needs. The response was incredibly helpful. Thanks to all involved.
Then, another Godwink followed. My mentor in business was the late, great Spencer Hays who resurrected my nearly 160 year old company in the late 1970’s to become a successful spawning ground for entrepreneurship learned and practiced by talented young people. His business built people who, in turn, built opportunities for themselves and for others. I have loved working for him and his vision.
Spencer dearly loved his mother in Texas, Mary Moore. So much so, that he established the Mary Moore Foundation, a non-profit organization that distributes donated funds to employees and select non-employees with special needs caused by the unexpected.
The foundation is managed by trusted former work colleagues of Spencer, and our astute V.P. of H.R. funnels requests to them. After prayerful thought, and some encouragement from others who are familiar with the MMF, I humbly asked for help to fund assistive transportation for grandson Hayes. His mom worked with Spencer during a couple of years prior, and many in my workplace know Hayes’ story with DMD.
I submitted a letter with the help of my caring VP of HR ally and made the application in the name of Hayes’ mom, with dad’s blessing. Wow. In just a few days, the request for a sum to be decided by the Trustees was quickly granted, and a check for several thousand dollars reached my grandson’s mailbox just yesterday. The mentoring and nurturing care of Spencer Hays lives on. But, that is only part of this special story.
A week before the check arrived, I was told that the application had been approved for a significant amount I could hardly imagine. That following Sunday afternoon, in our home, with Hayes, his mom and dad, my son who is Hayes’ Uncle Bubba, and my wife Mimi, I got everyone’s attention and declared that Spencer Hayes’s spirit of giving lived on and that we were receiving several thousand dollars for assistive transportation for grandson and daughter.
Hayes jumped up, exclaimed out loud the amount of the award, called us all to a group hug, and we solemnly rejoiced. Get that … even a 7 year old clearly understood the wonderful magnitude of generosity given by a servant leader whom Hayes would never know personally, but now certainly knows to be real.
May God bless servant leaders who use their generosity as a love language.
Kindly yours,
Papa in Franklin
A wise American writer once said, and I paraphrase, that one cannot be kind too early or too often because no one knows when they will no longer be able to be kind to others.
Generosity is a wonderful form of kindness. My youngest daughter, a mother of two beautiful little girls, set up a Go Fund Me account a few weeks ago in the name of Tom McNabb, the husband of my oldest daughter and wonderful father to grandson Hayes who has DMD.
Wonderful folks have already donated over $28,000 and the balance keeps growing. The goal is to pay for needed home improvements and a wheelchair accessible van to accommodate Hayes’ increasing mobility limitations.
The fun to me seeing these donations coming in is to reminisce about fond experiences with some of the donors we have known for years. But, what is more intriguing to me are the number of “anonymous” donors who are so generous. They are giving purely from soulful kindness without any expectation of attribution.
The entire undertaking is humbling. Ultimately, the van will transport Hayes and family to school, doctors’ visits, clinical trials, field trips, and family vacations. But, in the short term, the generous kindness of so many wonderful folks is transporting me and my family to a special place in the heart … a place where Christmas, Easter, Birthdays, Anniversaries, Weddings, and other special occasions reside each day of our lives.
Thank you.
Kindly yours,
Papa in Franklin
Watched two NFL games over the weekend. In one game, a young star quarterback worked through the destabilizing pain of a high ankle sprain and willed his team to a win. In the other, the visiting team simply wanted to win more than the home team, in a snow storm.
In each instance, it was the WANT factor that prevailed.
What do we DMD caregivers want for our stricken children? A cure is obvious. But what short of a cure do we want? A slowing of the muscle degeneration, sure. More range of motion on less doses of steroids, absolutely. Less fear of the future, you bet.
I know labs are working hard on the DMD mystery. But those losing teams I watched over the weekend worked hard, as well, nonetheless found a way to lose anyway. What level of WANT makes a real difference?
The kind of want that becomes the primary purpose for research constituents to enthusiastically go to work each day and to smartly consider going somewhere never visited before. Or, taking a promising approach, such as CRSPR genetic therapy and pushing our understanding of it to outer limits. Not being satisfied with “standard care” but rather aiming towards break-through phases of research that could not be imagined five years ago.
To the research teams working DMD, be more daring, push the envelope even further, and develop a competitive zeal to prevail against each other and against bad odds.
No pain, no gain … whether winning a football game or finding mitigating approaches to the effects of DMD.
Kindly yours,
Papa in Frankin
One of my least favorite personal maintenance tasks is getting a haircut. At least I am wise enough to be thankful that I have enough hair to groom at 71 years of age. Thank goodness for Claire, my barber. She is exceedingly competent as a hair expressionist and a very delightful soul (who definitely has the gift of gab).
I shared with her some of the warm experiences my adult lifelong partner and wife Mimi and I enjoyed during the Thanksgiving/Christmas/New Year’s celebrations. (My last haircut was before Thanksgiving … told you that I do not like haircuts).
Then, the God wink occurred. Pastor Davis Chappell of Brentwood United Methodist Church mentored us during last November to expect the unexpected as we grow in Christ.
Well, Claire, upon hearing some of my holiday stories, picked up the conversation and candidly discussed a daughter’s young years living with an alcoholic father. So bad, that she would visit with relatives during summer months primarily to take a break from him in the absence of a living mother. Turns out that he suffered under an alcoholic father. Then, she said something that, on one hand, was wonderful and, on the other hand, was sad.
Claire said she forgave her dad when he was still living … which was good for him. However, he left a legacy of alcoholism for surviving family members. Lord, help us!
What does this have to do with DMD? Family legacy matters. We Duchenne parents and grandparents should increase our efforts to reach out to other DMD parents and grandparents to learn what to expect at certain ages and phases of the rare disease. My son-in-law and I have already done that to a certain degree; however, I hereby make a resolution in 2023 to pick up the pace and depth of reaching out to those who have gone before us with respect to raising and caretaking for children with DMD.
We are not alone. It took a haircut for me to be reminded of that important dynamic. Guess I will not wait so long next time to get in Claire’s chair!
Kindly yours,
Papa in Franklin
Just read an article about a recently discovered exoplanet. It has been designated as TOI 700 e. Seems that it has features conducive to life of some form.
What mostly caught my eye was the fact that it is ONLY 100 light years away from our planet. Only 100 light years. In other words, if we find a means of traveling in space at the speed of light, it would take ONLY 100 years to reach TOI 700 e.
That’s no fun. How in the world are we supposed to explore deep space when our fastest rate of travel is ONLY the speed of light.
We will get faster in space travel. Why? Because visiting heavenly bodies is our destiny.
What about DMD? What is in our destiny? A cure, no doubt. The only real question – when? Only when sufficient resources are dedicated to the effort and prayers are answered.
It is time to revisit and replicate President John F. Kennedy’s pledge to Congress in May of 1961, then to the American people, that the U.S. would reach the Moon inside that decade. We did.
Commitment. Not just emotional or moral commitment. Hard and smart research adequately funded by all available sources. Then, execution of a fine-tuned plan. What a suitable blueprint for tackling big challenges.
Let’s travel to exoplanet TOI 700 e, now, by finding a cure to DMD.
Kindly yours,
Papa in Franklin
The family gathering at our home during the extended Christmas/New Year’s break was wonderful. Grandson Hayes was the life of the party.
However, we missed our youngest daughter’s family from Tuscaloosa with two absolutely adorable grand daughters. Problem fixed.
This weekend, those three beautiful girls with wonderful father David visited us for a bit longer than 24 hours, arriving mid-day Saturday and leaving Sunday after lunch.
Ahead of time, I prayed for a fun packed, no-drama, and engaging gathering. What unfolded was a magnificently enjoyable confluence of good times and delicious eats for all combined with intimate conversations among the “adults”. What a blessing.
When the house vacated today and Mimi and I drew a breadth, we could only talk about the quality of the brief 24 hour visit. The grand daughters absolutely love grandson Hayes, and he was the source of many fun activities. Our lives are enriched as a consequence.
In the snail-paced march towards finding a cure or substantial mitigation to Duchenne and its wear and tear on youngsters, each 24 hours of thoughtful research and persistent support of research will count a lot IF maximum effort and optimum brain power are expended during that time.
Please, let’s make every 24 hours of effort towards ending Duchenne draw us closer to good results, soon.
Kindly yours,
Papa in Franklin
A new year. A new approach to DMD, at least as it affects our family.
My essays on this site over the last three years often refer to Duchenne Muscular Dystropy as the “dream killer”. Initially, the shock of the diagnosis, historically disappointing lab results, and the motives and methods of Big Pharma juxtaposed against the dreary decline of youngsters with Duchenne made me edgy. Therefore, I would slap DMD by calling it a “dream killer”. Very dark.
Constant concern for the child’s health and safety, limited youth sports participation, classmates’ misunderstanding, worry about educational and career pathways, the hope for a family in the future … being new to the challenge, I could only jump to conclusions that, frankly, were not complimentary about my grandson’s future.
Well, we certainly have learned a lot about making lemonade from lemons. It helps that Hayes has such a loving family. And, we all like adventure. Furthermore, Hayes is a very bright youngster.
Some kids will excel in a sport. Hayes more than excels in learning. Labs seemingly are starting to step up their game with improved genetic re-engineering research. We have compacted years of travel and fun into the last three years or so and plan to continue packing as much fun and adventure into Hayes’ life as our family standard. His medical team at Cincinnati Children’s Hospital is top notch.
Life mortality is increasing. Young men with DMD are going to college, getting married, and having children. Light is piercing the darkness of DMD.
Because of Hayes’ easy understanding of scientific principles and interest in all things science, I would not be surprised if he ultimately becomes a member of a research team that finds a cure to Duchenne.
I am changing my perspective about DMD. I resolve to no longer refer to DMD as a “dream killer” but rather as an opportunity for youngsters, their families and caretakers to elevate their game of life to heights that may have been taken for granted if DMD was not part of their lives.
DMD – an impediment to be overcome by faith and big hearts, the miracle of modern medicine, excellence in all things lived, and avoiding unhelpful feelings. To the contrary, we DMD families have infinite reasons to find blessings associated with our collective fight to end Duchenne.
That is my New Year’s resolution.
Kindly yours,
Papa in Franklin
Went back to work, today. Very light commute. Not many folks in the building. Got a lot done.
For the brave souls who made it in, I was able to share my wonderment about how peaceful and calm was our Christmas break. Why?
Ever noticed how quiet the outdoors becomes when it snows. No birds chirping; not much traffic, the giggles of small children sledding.
During that peaceful break, I had the good fortune of engaging in substantive family talk, pertinent Bible study, reading the words to old Christmas hymns and learning the background of some of those glorious songwriters, and just watching the snow fall while walking in a field by our home. Quiet time.
Perhaps, quiet could be another arrow in the quivers of DMD children, their parents, grandparents, and other loving caregivers. The quieter it got, the more I reminisced about the abundantly good times shared with DMD grandson Hayes. More importantly, I started thinking about the next adventures with him and the family … and, I am not waiting until Spring warming.
Even Jesus sometimes had to get away from the overwhelming crowds. Methinks optimizing quiet times going forward will better equip me and others to deal with the dream killer. Sure hope so.
Shhhh! I hear quiet!
Kindly yours,
Papa in Franklin
We lost internet connectivity during the entire day before, and during most of, Christmas Eve. And, our home was the designated collection point for Christmas Eve dinner and initial gifting! What to do?
Well, we and our grown children had conversations, about many subjects. We took stock of stored DVD’s. We watched movies from yesteryear. I found a deck of cards and figured out that all family members, young and old, could play and enjoy Black Jack (or 21 as I used to call it). And, with the help of natural gas, we enjoyed a fine meal prepared by the two chefs in my life, my oldest daughter Ashlee and life companion Mimi. I actually read (but did not sing) verses to famous Christmas carols, especially the old ones from hundreds of years ago. Those historic songwriters really mastered the old English language.
How does this circle back to DMD? The parallelism.
Looking back on the last nearly four years since Hayes’ DMD diagnosis, the countless conversations we have had with other DMD parents and grandparents, medical providers, non-profit sources, lab supporters, and each other as to how best we should tackle the dream killer have always been quite informative, even to the point of being encouraging because everyone on the arena has a story or update to share.
We have intentionally embarked on adventure after adventure, recreating at fun venues, enjoying the outdoors, and feeding Hayes’ high intellectual curiosity. He will always have those memories as an emotional anchor and source of joy in the future when things are not going as well. Furthermore, we enjoy each other’s company around the dinner table more often.
I find my prayers for hope to be a bit more mature, not just asking for some result but rather seeking the strength to maintain a consistent and calming faithfulness that helps my anxiety and occasionally seems to rub off on the rest of my family.
DMD creates outages, some expected, some not so much. This year’s Christmas Eve internet outage has reminded me of the importance of enjoying the simple joys of life, finding strength in family and faith, and planning or looking for the next adventure together. Tis a time of the year to focus on what is truly important in Life, indeed.
Kindly yours,
Papa in Franklin
Just underwent prostate surgery for BPH … TURP was the procedure. Basically, a lemon sized prostate gland that should be the size of a walnut is sliced and diced through a scope to allow the urethra to return to a normal-sized portal for peeing. Seems to be a real bane for men, especially as they get older. Hopefully for me, 2023 will be a much more comfortable year.
The procedure took alittle over an hour, under anesthesia. A stop-over in Recovery should have taken about an hour, two hours max for post-op observation. I was in Recovery for nearly five hours, waiting on a room upstairs for an overnight stay. The reason given … 16 nurses out reportedly due to flu conditions. Turns out that the hospital is short by at least 16 nurses if not more because of a mass exodus from the nursing profession that started before COVID but certainly accelerated because of COVID related rigors.
Then, there is Molly, my post-op surgery nurse. She is wonderful. Resembles Jennifer Aniston. Low-keyed like your favorite aunt, just younger. Always eager to answer questions and provide stuff to improve comfort for the patient.
I kept my eyes closed for much of the five hours, but I listened intently to the banter of the half dozen nurses as patients were wheeled in and out of Recovery. Their spirit of collaboration with cheerful chatter was refreshing and obviously helpful for the patients, including me. Molly seemed to be the silent leader of the group although others may be more senior. Her relaxed intensity and quiet self-confidence separated her from the rest although they have their own constructive traits as well.
I wonder if Duchenne ward nurses are running a shortage. Sure hope not. Duchenne children need all of the support that they can get. If their ranks are short similarly to my experience, at least I hope and pray there is a “Molly” on each Duchenne ward in the dozen or so hospitals in the U.S. that seem to be most effective at measuring and mitigating the progression of Duchenne, including Cincinnati Children’s where my very special grandson Hayes gets his check-ups.
Labs and pharmaceutical companies remain behind in terms of fighting Duchenne but nurses the quality of Molly certainly can pick up the slack when Duchenne patients come into their domains. May God bless the Molly’s of nursing.
Kindly Papa,
Franklin, Tennessee
“Portal”. A doorway or gate that provides access to another space.
Now as the regular college football season nears an end, we hear of dozens of players who are entering the NCAA’s transfer portal to look for more playing time at another collegiate program. Savvy coaches endeavor to optimize the opportunity to pick up good players who, for some reason, elected not to come to their program in the first place.
Just finished watching, for the third time, Ken Burns’ first episode of his acclaimed series, “The National Parks – America’s Best Idea”. Thank Goodness that Americans and their leaders during the 19th and 20th Centuries voluntarily elected to preserve pristine and beautiful spaces of America’s most glorious landscape, not to be trampled by money driven profits of man-made developments.
One contributor called the National Parks a “portal” to the awe-inspiring grandness of historic America. I agree to a point. In addition to historic grandness, I find that the National Parks provide today’s America and her visitors unique and beautiful safe places free of human conflict, pandemics, classism, racism, sexisim, and financial worries. Thank Goodness for the vision and tenacity of original pre-eminent park advocate, John Muir, who championed the establishment of Yosemite National Park which, in turn, motivated President Teddy Roosevelt to enact legislation to preserve large spaces of land and waterways to become national parks.
Does DMD have portals? Yes. For my grandson Hayes, now 7 years old going on 10, his sharp intellect, funny personality, and charisma appreciated by his classmates provide a gateway for us nearest to him to access his greatest gifts to the exclusion of thoughts of the horrible aspects of DMD. Other DMD children have their own special means and talents, or portals, for helping their families, friends, and caregivers avoid the deep angst caused by DMD.
May researchers and medical providers find medical and genetic portals that divert DMD children from the progressively destructive effects of DMD to better days of mitigation and, may I say, a cure for Duchenne Muscular Dystrophy.
Kindly yours,
Papa in Franklin
My father-in-law was successful in the food service, then in the commercial real estate businesses. With an 8th grade education, this WWII best of America soul graduated valedictorian of the college of hard knocks. The great American success story. He was my best friend. What a wonderful person.
He never knew my DMD grandson, Hayes. They would have absolutely adored each other. Poppy liked to cut up, and Hayes likes adults who cut up with him, like me. Thanks, Poppy, for training me so well!
Hayes just brought home a straight A’s report card from the Second Grade. More importantly, he has been tested for a 147 IQ and is in the top 99 percentile of ALL American students in all grades! He is a brain.
In addition, however, he is a favorite among his classmates (especially the girls) and really knows how to charm a room. Wow, what a combination of for a future influencer!
Why am I doting on smarts plus excellent people skills? First, not everyone enjoys such a balance of talent. Secondly, Poppy would be proud, like me.
But, perhaps, most importantly, the combination of intellect and people skills just may result in Hayes’s admission to a top research university, then a clinical lab later, that could find a cure to Duchenne. Now, would that be monumental!
For those in our channel of Duchenne sufferers, let’s help the isolated but bright DMD youngsters become more social, encourage the social but not brilliant DMD youngsters learn more about the basic RRR’s to get ahead, and all of us others figure out where we can contrtibute, by whatever means are readily available to each of us. Let ‘s not let our particular talents be taken for granted. That would not be the smart thing to do.
Kindly yours,
Papa in Franklin
Just returned from our annual family vacation to a popular beach location. The facility and condo unit basically made our stay weather proof. A wonderful time, especially with three grandchildren, including our Duchenne grandson Hayes who learned how to play Scrabble with the adults. He is so smart.
This annual vacation is well planned and typically includes features to be enjoyed by each of our family members. This year, it was a constantly streaming lazy river stream of water inside the complex for tubing to avoid the heat and uncertain weather of the beach. Quite the enjoyable fall-back activity.
Vacation is fun for families looking for a break in routine, especially post-COVID. However, researchers and financial supporters of that research supposedly motivated to find a cure to Duchenne should not be allowed any vacation from the effort.
A national news outlet reported last evening that one of the world’s premier biopharmaceutical companies headquartered in New York City, just as an example, spends more dollars on advertising than on research in certain clinical and pharmaceutical endeavors. Sounds like a paid vacation to me, as a personal opinion that is not limited to any particular big Pharma concern.
Come on researchers and related funders. Get beyond gaudy ROI and unnecessarily extended trial periods pushing for mitigating drugs and exotic genetic manipulation and get to the heart of the dreadful disease so it no longer lays a path for a death sentence for thousands of young boys each year.
Proift is important in our economy but freeing boys from the dream killer of Duchenne should be considered much more important and imperative. Be a hero in terms of modality results even if some profit is sacrificed in the process.
Please, do not take a vacation until we learn to end Duchenne.
Kindly yours,
Papa in Franklin
Mother’s Day 2022 was wonderful for our family. My two daughters are doing great jobs mothering their children. My wife Mimi gave so much of herself to make sure the kids wanted for nothing.
Good moms are a national treasure. Thank you.
Last evening, getting ready for bed at the end of Mother’s Day, my irrepressible 7 year old Duchenne grandson asked my oldest daughter, “Mom, will I end up in a wheelchair?”
His parents have been totally honest with our grandson about his DMD and the consequences of the disease. Grandson Hayes is so smart that he even understands the genetic mutation that caused the premature stop of the protein while developing muscle in the womb that caused his Duchenne.
She answered, “Well, it is highly likely that you will end up in a wheelchair. However, it will be the coolest wheelchair you could imagine!”. “How cool, Mom?”, he asked. She quickly answered, “Cooler than your go-cart (he has an electric cart that allows him to turn donuts in front of the house).
Hayes’ obvious angst disappeared. He seemed quite content with that prospect of being cool in a wheelchair.
Now, that is one cool mom. Kudos to her for establishing a healthy perspective that should give our grandson something not to dread but to consider cool among his peers.
Cool moms rock. Cool is good, even within the realm of Duchenne.
Kindly yours,
Papa in Franklin
Had a great work week following Easter. Re-committed to paying attention to details.
Did not take anything for granted. Asked more questions, thought of additional potential solutions. Whatever it was going to take to avoid being a Mr. Mediocrity™, I did it in spades, and the results validated the focus, for which I am very thankful.
Nightly television has gotten so bad that I go to YouTube, pick out a thematic visual production that fits the moment, with music (typically Jazz), and read and relax, think and relax, or … just relax. The details of the video backgrounds normally are stunning, whether inside a coffee shop, on the side of a mountain, or in the midst of blooming flowers and butterflies … good stuff.
Attention to details seems to make a positive difference in our lives, from picking up on the sadness of a loved one or close colleague, to keeping good records for tax reporting, to pulling apart the layers of an evocative Bible verse.
And, then, there is Duchenne and the over 25 years of research for a cure or at least significant mitigation and scores and scores of millions of dollars raised, appropriated and spent in the effort … and we Duchenne families, especially among the young ambulatory patients, are not much closer to good news than similarly-situated families were two decades ago.
Challenge: Let us Duchenne families and the medical providers who are making a positive difference in the battle against DMD challenge those who are searching for answers pay greater attention to details, whether details of trials past or details of currently active research.
My father was a pre-eminent Mechanical Engineer in charge of materials testing at a world class research lab in Birmingham whose team with other U.S. scientists and engineers helped put Man on the Moon and participated in the design and performance development of powerful delivery systems that kept evil autocratic powers from incinerating a generation of people.
Dad once told me that research cannot be placed on a timetable or schedule; it is not a water faucet to be turned off and on. Rather, good research requires great attention to details which takes time but will more times than not evolve into an epiphany of good discovery.
With DMD, let’s challenge the medical and scientific communities to pay greater, laser-focused attention to details to reach an epiphany in the form of a cure to Duchenne.
Kindly yours,
Papa from Franklin
Easter 2022 fit advanced billing. Certainly included many facets of human needs. Paused. Reflected. Took personal inventory. Exchanged kind messages. Prayed a lot. Revisited an individual’s courage and a community of cowardice. Did not dwell on death but rather rejoiced for the rebirth. Shared all with family, including my Duchenne grandson Hayes.
We gift basketed him as if it was Christmas all over again. Probably the wrong message for the holy day but certainly a source of a joyful gathering.
Chasing a cure to Duchenne is also a complex basket of needs and challenges. Another gene therapy trial has hit a wall. Children have died. What is needed? Well, let’s replicate our Eastertime conduct –
Pause – get rid of unnecessary noise. Think. Pray.
Reflect – Re-examine the data, discard the trash, and build upon mostly promising information.
Have the courage to travel new paths to discovery.
Do not be afraid to fail as long as there is an alternative Plan B for the pivot.
Ignore the ongoing muscle deterioration and focus on little successes.
Share the journey with family and friends who provide support and encouragement.
Let’s renew our resolve to rid humankind of the evil of Duchenne.
Kindly yours,
Papa in Franklin
We celebrated grandson Hayes’ 7th birthday last weekend at a local park. Kudos, City of Franklin, for maintaining such a wonderful, family oriented playground with so much to do in Pinkerton Park.
My daughter and I decorated the gazebo and made sure the sugar industry remains well supported with all of the confectionary treats we laid out.
So many young boys with parents showed up. As the day progressed, I clearly noticed commonality: they like each other, they like sweets and treats, their energy goes a long way and most importantly at least to me, they each quite obviously like Hayes and enjoy his companionship although he may not be able to run alongside them for any significant distance or period of time. Many thanks to you boys and to your parents for enabling such authentically heartfelt camaraderie.
I wonder if we adults could figure out a way to reintroduce to our lives’ culture the exuberance and loyalty of young boys raised correctly who absolutely will not abandon a cohort who they know, and he inwardly knows, will never be able to keep up physically because of DMD?
Frankly, who cares? The fact of the matter was that the celebratory event was a success on a Saturday that will be remembered by many for a very long time.
Keeping up is a vague term. Hayes was with his good friends and his friends were with Hayes for that entire three hours of joy. And the parents along with my daughter never ran out of things to share with each other as the boys laughed, ate, and played together.
While lab researchers and clinicians try to figure out a cure to Duchenne, especially now that the entire genome mapping project is complete, we can count on good friendships laced with laughter and joy to mitigate the pain of progression of such a horrible disease. Let’s keep laughing, together!
Joyfully yours,
Papa in Franklin