A Break

Well, I took a break. Last essay was 2 months ago. New Year. Disappointing outcome of Hayes’ clinical trial … no one was hurt, but no one was helped, either. Thirteen months of nothing. Meanwhile, Duchenne marches on. 

COVID-19 not only marches on but it has dreadful cousins that may prove to be even more deadly unless governments and local distributors get their acts together to get vaccinations into peoples’ arms. Come on folks, stop demonstrating me vs. you human behavior when money is involved and become uniquely dedicated to the common good!

Insurance companies love playing doctor. Hayes had to suffer through a bad steroid protocol in order to become “eligible” for a superior steroid treatment that insurance might reimburse.

Again, money corrupts human behavior and human behavior sometimes fails to deal well with big problems, like honoring democracy, respecting folks different from the majority, charging fair prices in a time of need, insurers playing doctor, local office holders letting go of selfish power, the guy next to you in a crowded line not wearing a mask, a massive loss of manners and tactfulness, education being on hold … on and on and on.

Wow, I sound cynical here. No wonder I took a break. My glass is typically half full. I need to regain confidence in human nature. A businessman whom I admire very much says one should find a confidence anchor when in troubled waters or on the verge of embarking onto a new venture.

My confidence anchors include the fact that God is faithful to me/us, doctors and researchers really are working smartly and diligently to find a cure to the Duchenne dream killer, fair news reporting shines a bright light on corruption and inefficiencies, I love my job, my delightful wife and I have enjoyed and endured together over four decades of marriage, my grandchildren are absolutely adorable, each of my children, grandchildren and their pet dogs love me, and I have the freedom to speak my mind (and heart).

Enough of a break. Let’s reinvigorate our spirits and move forward together to fight Duchenne so our children and grandchildren with the dreaded, very unfair disease also have a chance to get a fair break in Life.

Kindly yours,

Papa in Tennessee

So Close

Today is winter solstice … the shortest day of the year. Snow is predicted for Christmas Eve later this week. Families are making decisions as to how they will deal with masks, social distancing, and just gathering in general during the Holidays while a germ has ended the lives of over 315,000 Americans since March. What a year. 

At least hope is revived with the distribution of two approved vaccines going on as this is written. Thank you Pfizer and Moderna. Please help as many Americans as possible before it is too late for some of them. We still have a distance to go to beat this pandemic.

Tonight, I and neighbors had an every 400 years (or 800 years, depending on sources) opportunity to observe “the great conjunction” of Saturn and Jupiter in the western sky.  Those huge spheres of gas and ice appeared to be sitting on top of each other. In reality, they are hundreds of millions of miles apart … our perspective down here just makes those two large heavenly bodies seem close together.  Just our perspective.

Duchenne. 2020 has been disappointing, to say the least. The pandemic has interrupted clinical trial participation. At least three clinical trials known to me that had offered hope more than a year ago resulted in showing no efficacies and, therefore, have been shut down. Hope remains with gene slicing technology and recently a renewed interest in enzymes. Meanwhile, the 50 year standard of care of using steroids to mitigate inflammation and associated pain, with their own serious long term risks continues as the default treatment.

COVID-19 now has an end game, but the goal line still remains distant.

A conjunction of Saturn and Jupiter was fun to watch but is more of a mere perception seen from Earth than a close call between the two largest planets in our small galaxy.

 DMD researchers and stakeholders remain persistent in their quest to end Duchenne despite clinical trial set back after clinical set back while research proceeds at a glacial rate of speed.

Who knows, we may be closer than we think to ending the Duchenne dream killer. The uncertainty of outcome and the timing of helpful news causes us fatigue brought on by a germ in one instance and a missing protein in the other. 

 Ancient Jews certainly waited a long time for a savior. Faith and hope helped them endure. This Christmas, faith and hope can help us in the Duchenne community endure as well.

 Kindly,

Papa in Tennessee

Persist

Sir Winston Churchill once said, “If you are going through hell, keep going.” He should know!

Just got news that a previously promising, out-of-the-box clinical trial test for mitigating the effects of Duchenne without the use of steroids has been shut down in its phase 3 due to inconsequential results. That news is particularly worrisome for me and our family because grandson Hayes was participating in that clinical trial.

To my knowledge, there are no other highly publicized clinical trials beyond phase 1 going on without an emphasis on steroidal use which has its own set of undesirable issues.

What next? To pause, think, and pray … not necessarily in that order.

The COVID-19 pandemic and civil authorities’ incoherent responses to managing its disruptive and deadly effects have made 2020 a year to forget. Unfortunately, we now understand that some part of 2021 may not be much better.

What to do? Pause, think, and pray … again, not necessarily in that order.

But beyond thoughtful and prayerful contemplation, we must act. To act, we must persist.

Let’s not give up on any seemingly overwhelming fronts in our personal lives or in the life of our nation.

 For our nation of a free People, let’s rethink, then act upon, personal behavior that will curtail the spread of the virus. Even if that means changing course and taking steps that we personally resisted in the past … let’s not insist on being right but, rather, do the right things. Wear a mask, keep social distancing, plan necessary trips out into the public, remain informed, be there for others, and find new sources of personal joy and inner strength.

For the Duchenne community, we families should pick up some of the slack towards mitigating the horrid effects of the disease and no longer wait exclusively on pharmaceutical companies, researchers and doctors to organically come up with a magic bullet but rather elevate our own learning curves, increase public discourse on the subject, challenge smart constituents to be smarter with a more robust curiosity about finding a cure, and for all of us to … PERSIST … as we each go through the hell that only Duchenne as a dream killer can promulgate.

Indeed, pause, think and pray … but, moreover, let’s renew our collective call to action to persist in finding an end to Duchenne.

Kindly,

Papa in Tennessee

Pumpkin Patch

Time to change May plantings in the yard to Fall colors. Mums are the traditional approach … multi-colorful, easy maintenance, and … short lived to the first frost.

Oh, what to do. I have relied on gardening as a relief from COVID-19 and grandson Hayes’ 100% fatal Muscular Dystrophy known as Duchenne. 

Pumpkin patch. I tore out my red Dragon’s Breath that gave basically four months of red color and replaced those spots in the front yard with half a dozen orange pumpkins. Nobody in the neighborhood is doing this practical and affordable yet colorful approach. Looks great. Satisfied. And, yet, what does this have to do with deadly Duchenne?

Out of the box thinking. Do something nobody else is thinking about doing. Come on, researchers in this era of pandemic mitigation, assuredly you can go after Duchenne in a manner that has not been tried before. What is there to lose?

Grandson Hayes is well into star-gazing. He has a profound understanding, at age 5, of the vastness of Space. We talk about it, often.

Is an end or a notable mitigation to Duchenne any more unreachable? Of course, not! It is a matter of intelligent focus and more focus.

Pumpkin patches are fun and a short-term eye candy. Duchenne is a dream killer. Let’s attack the killer with all we have, please!

Kindly,

Papa in Tennessee

Squeaky Wheel

There is a metaphor that says, “The squeaky wheel gets the grease.” What does that mean? Among other things, the notion suggests that a problem which becomes most conspicuous typically gets a solution before problems not on people’s radar screen. The currently feverish search for a COVID-19 vaccination is a good example.

In ancient days, according to Dr. Luke, there was an autocratic king who did not particularly enjoy entreaties from ordinary folks. One day, an ordinary lady approached the king in his court and begged to be heard about a need important to her. The king initially did not want to give the lady any time, much less an audience. She persisted, even crying out, to be heard.

Alas, the king finally relented and listened to her. We do not know for sure if the king provided a solution for the persistent lady, but we do know he listened to her when his background and instincts would have preferred to the contrary. The ordinary lady in that oft-repeated Bible story acted like a squeaky wheel. She eventually got the grease!

The Duchenne community needs to maintain a squeaky wheel. Today is the end of the Duchenne Action Month of September, 2020. Thanks to the thousands of constituents and other caring persons and agencies that took the time to make a bit of a positive difference with respect to drawing attention to what is needed to cure Duchenne.  Indeed, there will be a cure one day, just like there invariably will be a vaccination or anti-body for the pandemic virus over the next several months. 

Let’s all get squeakier in the uncertain months to come with the intent of influencing the medical research community, pharmaceutical companies, funding sources, policy makers, and even Duchenne constituents who may have become a bit apathetic or hopeless to listen even more closely and act more robustly and to do something helpful about what they are hearing with respect to dream-killing Duchenne Muscular Dystrophy. Let’s be more like that ordinary lady in ancient times.

Kindly yours,

Papa from Tennessee

Change

Been working around the yard and kayaking the Little Harpeth River in 80 degree weather since school would have normally started during late August-early September, but for COVID-19. Planted flowers last weekend in 70 degree weather. No leaves were on the ground.

Then, all of a sudden, I come home from my work commute this evening and have to put on a sweater because the temperature is dropping to the low 40’s  this evening. And, there are fallen leaves in my yard. Wow, what a change!

More change. College football normally marks America’s beginning of Fall, at least in terms of sports fandom entertainment. This year, the SEC started its season in late September. Very different.

Some things do not change, however. Dogs’ familial instincts about genuinely good natured people. Young children’s laughter at just about anything silly or playful. The precious moment of a soft kiss. God’s unconditional love for us, individually, regardless of our faith or absence of faith.

 And, then, regretfully, there is the inevitable lethality of Duchenne Muscular Dystrophy. A dream killer that has not changed for the better, not at all. We can change the ultimate outcome of Duchenne. Getting control of COVID-19 is showing us what focused public policy, medical research supported by adequate funding, and persistent public awareness can do when pressed to solutions. 

Our Duchenne community is pressed for solutions. It is time to ramp up even moreso than before for change, and change sooner rather than later. Let’s refocus and work smarter to combine the best of medical research with generous funding and increased public awareness to end Duchenne during this generation. Now, there would be a change worthy of the grandeur of Life itself, indeed!

Kindly yours,

Papa in Tennessee

Awareness Should Never End

This month of September has been Duchenne Action Month. 

Knowing no boundaries, the Duchenne community has striven to get people acquainted with the significance of the fatal disease, raise funds for research, and to band together the children and families who live through this nightmare.

Results? I cannot speak for others, but I do know my participation with the support of a wonderfully involved family. Extra essays written on this blog this month. Financial contribution to Parent Project Muscular Dystrophy. Increased private discussions with friends and acquaintances who authentically ask how we and our grandson are doing. Closer attention to the few promising clinical trials currently underway despite COVID-19 interference. Prayer. More prayer. Looking for a glass half full.

This month of September is nearly to an end. Please, each of us who cares about finding new treatments and ultimately a cure for Duchenne should reassess what all we each can do or contribute for this worthwhile cause. 

Think, plan, pray, make happen. What can each of us who care do this month and for the months to follow to help end this terrible disease and help the kids and families dealing with it?

Kindly yours,

Papa in Tennessee

Road Signs

Hayes continues to show his unique intelligence. Last Sunday, his mother was driving them to a local destination while he sat in his booster seat in the back when he showed off his smarts. 

As they passed road signs, the five year old was reading the names on the signs out loud, one and two syllable words that he may or may not have knowingly seen before. Not bad for a child virtually attending basic kindergarten. He did, however, get stumped on a particular sign on a building with just letters … AT&T. Mom quickly explained that reference to his eager satisfaction.

This last weekend, my son and I endeavored to go kayaking down the Cumberland River, below the growing Nashville skyline. What an impressive sight!

 To reach our launch point by the amphitheater downtown, I had to find Victory Lane which appropriately runs east along the Tennessee Titans’ stadium. Unfortunately, our planned outing was short-lived because of a puncture in one of the inflatable kayaks … although, we did get in and enjoy some delightful river level sightseeing.

Finding Victory Lane did not necessarily lead us to a victorious self-propelled boating trip but certainly did provide for a quality outing with my son on a beautiful Saturday seeing Nashville from an awesome angle I had not previously enjoyed fully. Success can be measured by any number of different ways, indeed. 

My hope and prayers, again, are for researchers and Duchenne constituents to identify a path towards victory with respect to finding a cure to the muscular deteriorating killer of dreams. That Victory Lane will be the best road sign Hayes and we will read together, hopefully in the not so distant future.

 Kindly,

Papa in Tennessee

Mind and Memory

Mark Twain is quoted as saying, “It will take the mind and memory months and potentially years to gather together enough details and, thus, learn and know the full extent of a loss.”

Terrible fires and other catastrophic natural disasters. 

The lasting consequences of COVID-19.

9-11.

And the ongoing tragedy that is Duchenne Muscular Dystrophy.

During this solemn day of remembrance of that horrible day in September 2001, let’s reenergize efforts to make Duchenne a memory worthy of never forgetting but no longer fearing.

Kindly,

Papa in Tennessee

I Can Dance

At age 5, Hayes has exceptional intelligence. During virtual Kindergarten class earlier this week, the teacher asked the children to write a sentence about their favorite skill. 

Hayes could have said, truthfully:

I can count to a hundred thousand and then some; 

I can name the planets, their moons and the gaseous nature of each planet and mini-planet in our galaxy; 

I can explain black holes and the fact they are not the limit of the universe;

I can name the continents, seas and most countries of our mother Earth; 

I can name each element of the Periodic Table; and

I can charm the pants off of my grandparents. 

But, what was HIS response: “I CAN DANCE!”

Hayes, indeed, can dance. He does so each day during virtual school when the teacher has her students take a break, loosen up, and “dance” a bit. He dances with his mom and dad every day and with the rest of the family when we spend time together every weekend. He’s got the moves.

No matter how difficult life can be due to events simply beyond our control, moving to the rhythm of music is a wholesome and spontaneous physical and emotional exercise. So while Hayes is just enjoying dancing he’s incidentally inspiring his family to embrace a healthy escape.

Next time you get down or feel overwhelmed play some good music and DANCE. I tried it, it works.

Kindly,

Papa in Tennessee

Giving Thanks On An Anninversary

September 7th is World Duchenne Day, a day for DMD constituents to raise awareness of the fatal disease that affects thousands of new children each year and to encourage funding for the search to end Duchenne.

Around this time last year, I asked the Tennessee Governor’s Office to proclaim September as Duchenne Awareness Month and Governor Bill Lee obliged. Thank you, Governor.

Local firemen spent a Saturday in September “passing the boot”, having donors literally place their dollars inside a fireman’s boot. Thank you, firemen.

Parent Project Muscular Dystrophy and Cure Duchenne sponsored fun events such as races and walks to raise awareness and funds. Thank you PPMD and CureDuchenne.

Yesterday was my 43rd wedding anniversary with a very loving wife. Our grandson Hayes is our special buddy. He visited us as is usual on the weekends and he blew us away with how smart he is which is also typical. The roses, cards, story-telling and good eats were wonderful, but our grandson’s laughter and curiosity were absolutely Life enhancing. Hayes, thank you.

My hope and prayer this anniversary is that, by this time next year, there will be good reason for us Duchenne families to be more hopeful for an end to Duchenne before too many more anniversaries pass. Time is not on our side; however, the hope brought by advancing medical science and the increasing awareness of our challenge keep us uplifted each day.

To everyone involved in developing treatments and ultimately a cure, including doctors, nurses, scientists, fundraisers, researchers, and community organizers; thank you.

To those Duchenne families who have made it another year, thank you for your strength and courage. You are an inspiration to other families.

Thank you.

Kindly,

Papa in Tennessee

Take Not For Granted

Missed opportunities to do good or to smartly end an obstacle in Life can hurt.

Late last week, as I turned onto my street from work, I was surprised to see a large moving van outside a home across the street. Mobility is not novel around here. Not knowing a neighbor is unusual, however.

We talk often with neighbors all around us. A fun neighborhood, indeed. However, when the family that is moving out moved in a little over a year ago, I never went over there to welcome them. I never got to know the young couple from Massachusetts. (Dang, I would have loved hearing former Pat QB Tom Brady stories!)

More seriously, we do not want to miss opportunities that can change lives. The Duchenne community is painfully aware of the importance of optimizing the value of each day of their lives with a Duchenne child, constantly keeping up with (sparse) clinical trial results, staying in touch with other Duchenne families, and praying (many times a day) to keep the faith in hope for a better tomorrow.

I may have neglected meeting that outgoing family last year. But, I absolutely will not fail to introduce myself to the new incoming family. I will not miss another opportunity to make new friends in the neighborhood. (P.S. After writing this essay, I did go over and meet the outgoing neighbor Kevin, and we had a big time chatting.)

As for Duchenne and our sadness of seeing a so very bright five year old grandson become increasingly weaker in the hips due to the disease, I am not missing the opportunity to raise awareness about the immediacy and importance of raising awareness. After all, September is Duchenne Awareness Month worldwide.

 Let’s do all we can to help the medical research side of Duchenne smartly pick up the pace to make substantial progress towards mitigating the effects of, even ending, Duchenne.

It is terrible. Let’s make the most of each opportunity to achieve our goal.

Kindly,

Papa in Tennessee

Not Long Ago

100 years is not very long ago. 

Women’s suffrage after a Tennessee vote ratified the 19th Amendment. Automotive assembly lines that led to mass production of the Model T Ford. The Spanish Flu that killed over 50 Million souls worldwide. Radio (with vacuum tubes) was the main media for household entertainment.

So much is different and yet so much is the same in 2020. 

Women not only vote but run for and hold high office. Vehicles for the mass public are produced worldwide. COVID-19 is not just another pandemic. Streaming replaces cable television as our favorite source of entertainment.

What about medical research to cure or at least significantly mitigate rare diseases? We’ve achieved major advancements with diseases like typhoid fever, tetanus, polio, diphtheria, and so many others.

What about Duchenne Muscular Dystrophy? Let’s not allow 25 years become 50 or 75 or, God help us, 100 years, before we’re able to save generations of young boys. Let’s cure Duchenne, now. 

How? Look at the common denominators that led to the major events listed above. Commitment. Talent. Communication. Information sharing. Courage. Funding. 

All of those forces exist today, ready to cure Duchenne. Let’s improve the synergies of combining those forces. Time flies. Let’s make the best of it to cure Duchenne and save this generation.

Kindly yours,

Papa in Tennessee

Making Precious Memories

The family just returned from the beautiful and wonderful family vacation spot Seacrest Beach to spend some much needed close time together.

The good: Warm dry weather. Safe travel to and from. Beautiful water bouncing off pristine sandy beaches. Family time. Plenty of activities including pontooning to Shell Island where our grandson Hayes fed fish from his hands, drove the boat, and had a lot of laughs. Personally, I kayaked at Camp Helen. We preferred the public access beach with far fewer people and umbrellas.

The not so good: Most visitors not wearing masks despite the Covid-19 hotspot. Price gouging at the local grocery stores. Talks about current politics. The long drive home.

All in all: Family joy, nature unique to the Emerald Coast, and fun activities vastly outweighed the sum negative.

For Hayes’ DMD, the monster may limit, even pain, him in the future. However, memories like the ones we plentifully made last week hopefully will help provide our adorable and smart grandson with a fountain of inner joy to help him overcome any perceived or real disqualifications he may experience down the road.

Come on DMD researchers, please find mitigating treatments soon so we will not have to necessarily rely only on memory making for these young boys. Let’s end Duchenne.

Kindly yours,

Papa in Tennessee

Thank You, PPMD

This time last year, three months after learning of my adorable grandson’s Duchenne diagnosis, his father and I went to Orlando and attended the annual conference of Parents Project Muscular Dystrophy. President Pat Furlong leads the non-profit and does a wonderful job.

We quickly learned that PPMD is all about real time and transparent information exchange. Collective knowledge along with world class genetic research will defeat Duchenne, sooner or later.

For four days, we listened to rare disease medical researchers, pharmaceutical reps, many parents, counselors, and PPMD leadership and quickly compiled a holistic understanding of Duchenne and its impact. In addition, we saw some very delightful young guys, mostly non-ambulatory, hanging together, listening intently to information flowing from the stage, and warmly sharing their personal experiences with anyone who would listen. For such a tragedy to have befallen us, getting onboard with PPMD in such an in-depth manner so soon after the diagnosis was a valuable kick-starter for father and grandfather. We instantly became committed advocates to end Duchenne.

Then, last week, due to COVID-19, we had to attend this year’s PPMD conference virtually. Pat Furlong again showed why she is such an efficacious leader. The technology worked for the most part. The panelists were exceedingly informative. The moderators kept the action going with terrific questions posited to speakers and panelists. And, God bless her, Pat promoted a calm spirit over the proceedings.

But, you know what? There is nothing like being there. Looking into the eyes of the Duchenne boys in wheelchairs, listening to the cracking voices of parents, measuring the authenticity of the presentations of pharmaceutical reps then following up with them at after hours settings, being able to immediately caucus with my son-in-law after each session. The virtual event was very informative but only the perspective of being up front and personal is truly revealing. 

To end Duchenne, we need more revealing. I reach out to our Duchenne community and ask that we continue Pat Furlong’s authentic approach to sharing late breaking news at her conferences and constantly highlight such late breaking news on a daily, weekly and monthly basis among those lawmakers, medical providers, research scientists, insurance companies, pharmaceutical companies, health policy makers and Duchenne families who wish to continue fighting the good fight.

Thank you, PPMD.

Sincerely,

Papa in Tennessee

Too Much Clutter

Wow. 2020 has presented a lot of danger and other challenges. No need to list them here … we all are affected.

What are the common denominators?  Unforeseeable.  Difficult to understand the source. Lives have changed abruptly. People have reacted differently. Families have re-evaluated their priorities. The “experts” are not in agreement. Lives are lost.

Sort of sounds like Duchenne, doesn’t it. Well, what do we do about it?

First, pray that whatever course of action we take within the Duchenne community is our effort not to be right, necessarily, but to do the right thing. To focus on what is needed most. 

For Duchenne, organizations like Parent Project Muscular Dystrophy  and Cure Duchenne are doing a wonderful job of bringing together the Duchenne families with the medical experts, pharmaceutical company representatives, support organizations, and legacy Duchenne families who so freely share their experiences with the monster. Kudos. Keep up the good work!

For the researchers, please, regain focus during this terrible time of turmoil and distraction and double up your efforts to find mitigation treatments and even a cure for Duchenne.

For the pharmaceutical companies, be thinking ahead as to how you can help with treatments coming down the pike to be affordable to ordinary families. 

For the legislators, spread your personal interest in other rare diseases to include Duchenne. Its dream-killing features should make Duchenne enemy number one, at least among those 1:3500 born each year with the odd genetic muscular defect.

I believe that focusing on the right thing to do vs. arguing over which lives matter most should help us Americans deal better with not only the multiple cultural upsets of 2020 but also with finding a cure to Duchenne. Please, help. 

Kindly yours,

Papa in Tennessee

It Just Takes One

Though George Floyd was just one person, his unjustifiable death sparked a massive movement for equality across our liberty-centric nation.

In 1920, Tennessee congressman Harry Burn of Niota reversed his views and voted yes on women’s suffrage. The Nineteenth Amendment would pass. That one vote made the difference and women were legally allowed to vote.

Can one person or one lab or one clinical trial end Duchenne? Absolutely, yes!

Can one family with a Duchenne child or grandchild or one fundraising program make a difference … most assuredly, yes.

Can one conversation with one influential person who can promote additional funding for research intended to end Duchenne make a difference? No doubt, yes.

Can one call or conversation from supporters such as Parent Project Muscular Dystrophy with pharmaceutical companies and research sponsors make a difference? Guaranteed.

The power of one is mighty if directed most effectively. Let’s each of us be that one. On our own, let’s figure out how we individually can be the one that fast forwards the end to Duchenne. Time is of the essence. 

Kindly,

Papa in Tennessee

I Miss You

The COVID-19 pandemic has interrupted life as we know it. The daily statistics for incidents of infection, hospitalization, cure, and unfortunately deaths caused by the virus numb the senses. I am afraid the people caught in the midst of COVID-19 have just become numbers. Let’s keep focusing on people, one person at a time.

And, then there is that one little person who can and often does warm my heart with simply a laugh, a knock-knock joke, a homemade surprise gift, or an expression of love that only a five year old can deliver with such innocence.

Last Sunday, grandson Hayes, with Duchenne, visited us with his mom and dad and our son. We sort of practiced social distancing in the back yard while playing water games but shared a lot of up close and personal family love.

Hayes got to the dinner table first because we grown-ups could not stop jabbering with each other. I worked my way over to the table and sat down across from my favorite little boy. I just stared at him, saying nothing. Then, he did it, again.

After making eye contact with me for what seemed to be a full minute, Hayes quietly said to me, “Papa, I miss you.”  He was alluding to the lesser time we are spending together due to the virus. 

Ouch. He deeply touched my heart, again. Hayes is an expert at making me exceedingly grateful for the blessings our family enjoys. With the immunological effects of Duchenne, we have to be very careful about our close contact with Hayes.

Well, Hayes, I miss you, too. Facetime, swapping digital pictures, and conference calls are convenient and help a bit. However, no technology in the world will substitute matters of the heart, especially our heartfelt bond.

Papa loves you, John Hayes. Missing each other when we live so close to each other is not an option. I am here for you (and with you) always and, together, we can keep genetic disorders and pandemics out of that special little place we share together within our hearts … indeed, a very special little place.

Kindly,

Papa in Tennessee

Gotta Be Weak To Be Strong

Jesus was kind and soft spoken when allowed. He also was sharp and outspoken when he felt it necessary to be so. He recognized the difference, time and time again.

Vernessa Mitchell passionately sings that one must be soft to be strong. I never understood that, until Duchenne.

Last night, I had a confrontational phone call from a beloved family member about a third party business challenge. For the first time in over 40 years, we sounded like adversaries. Shame on us. 

The Covid-19 downturn coupled with over two months of isolation has not set a positive stage for our dealing with a third party that does not care for us personally but only wants to take unfair advantage of the economic downturn which, frankly, got the best of us. The argument centered around whether we cave to unreasonable demands of a large organization or stick to our guns and not waiver. Be firm or pliable?

We obviously will do what is best for the family and, as for the argument, we will be fine because 40 years of genuine family love trumps short term economic gain/loss, every time, this time.

What is the point here? Duchenne constituents oftentimes must make decisions where there is no right or wrong answer. Sometimes, we must weigh the risk/benefit of taking a path less traveled. It is not easy. Patience, perspective, and genuine empathy help us balance those choices. God, I love my family, especially the most vulnerable. 

We all can become stronger by being weaker, more vulnerable to the needs and feelings of those in our grasp.

May I become a heavy weight fighter in the battle of understanding, especially as we fight to end Duchenne. 

Love,

Papa from Tennessee

COVID-19 vs. Easter 2020

Since last April when I first heard the term “Duchenne”, I never thought that anything else would ever get between me and my quest to get my gregarious grandson well, or at least safer. 

Well, a pandemic of lifetime proportions spawned from an ill-fated human-animal food chain and/or lab experiment halfway across the globe most assuredly has made me wrong, regretfully so. 

However, as we know, as disgusting and devastating as is this plague called COVID-19, and as deeply disturbing the human cost has been, the fact that every one out of 3,500 babies (mostly boys) born in the world has an always fatal Duchenne Muscular Dystrophy because of an odd genetic mix-up remains a very painful reality that must be dealt with until we end Duchenne. 

Therefore, during this safe distancing, isolated Easter of 2020, as we believers revere God incarnate very much alive, let’s agree that, as bad as this pandemic has become, we survivors will live for another day in the (hopefully near) future when our focus on ending Duchenne must be resurrected, and quickly.  Most assuredly, the everlasting spirit of Easter will win! 

Amen,

Papa in Tennessee