Surfing through life with the spirit of aloha

To persevere against neurological diseases such as Huntington’s and the aging we all face, I have learned that it is essential to develop meaning and purpose and perform mental exercise.

 

In May 1997, just seventeen months after learning that my mother had the devastating symptoms of Huntington’s, I confided for the first time in a medical professional who was outside my local support group. Explaining my family’s predicament, I revealed to a physician in Brazil, my second home, that I had a 50-50 chance of having inherited the HD mutation.

 

Thomaz Gollop, M.D., an OB-GYN, knew about the harm caused by genetic disorders such as HD and the enormous potential for psychological trauma involved when a family learned it was at risk: in Brazil he helped pioneer genetic counseling and testing, particularly for families who wanted to conceive.

 

I had gone to interview Dr. Gollop at his São Paulo clinic about abortion, a topic I was researching. Though Brazil, a fervently Catholic country, had outlawed abortion, millions of women found ways to terminate their pregnancies, often in precarious circumstances.

 

The disturbing history of this underground practice provides a cautionary tale for the U.S. as our Supreme Court prepares in June to apparently renounce five decades of protecting legal abortion. An affiliate of the American Society of Human Genetics and member of the American Association for the Advancement of Science, Dr. Gollop has been a leading advocate in Brazil for women’s health and legalization of abortion, emphasizing the medical – as opposed to religious ­– nature of the procedure.

 

I had not yet tested for HD. Because of my risk, my Brazilian wife Regina and I had postponed having children. I saw Dr. Gollop as a shoulder to lean on. I poured out my heart about my mother’s struggles and my fear of becoming like her.

 

Dr. Gollop told me: just keep doing what you like to do until the disease hits.

 

In my journey of risk – I tested positive for the mutation in 1999, followed by our daughter Bianca’s negative test in 2000 – I have frequently reflected on Dr. Gollop’s advice by imagining the simultaneous challenge and beauty encountered by a surfer riding a wave.

 

“Just keep surfing through life!” I tell myself.

 

Celebrating our 30th anniversary in Hawaii

 

During this, Huntington’s Disease Awareness Month, we must recognize the enormous caregiving and financial burdens imposed by HD. As a result, affected families must often relinquish their dreams. Regina and I did not have more children. We gave up buying a vacation condo in Brazil. I turned down an offer of a better job at a research university in another state so that, if I were unable to work, we could rely on Regina’s secure salary and pension from her job as a public school teacher.

 

My risk of becoming disabled means we have focused on saving, to bolster my long-term care insurance policy. So we usually take modest vacations.

 

This year, though, we splurged a bit. To celebrate our 30th wedding anniversary – which I had never expected to reach with the HD-free health I have enjoyed – we traveled to Hawaii for the first time. In late March we visited the islands of Kona (the Big Island) and Oahu.

 

We found Hawaii wondrous with its primordial, balmy setting: we saw molten lava flow in the crater of a volcano and heard a resounding chorus of birds sing at sunset. Along with newlyweds and other couples marking anniversaries, we were called to the stage at a luau to slow dance to a Hawaiian love song in celebration of “ohana,” the Hawaiian word for family.

 

Keeping alive the joy

 

I was introduced to the story of the father of modern surfing, Duke Kahanamoku (1890-1968), a native of the Waikiki neighborhood of Honolulu. A dark-skinned man competing in a world dominated by white athletes and sports officials, Kahanamoku impressed the world by winning gold and silver medals in swimming at the 1912, 1920, and 1924 Olympics.

 

Also active in rowing and water polo, Kahanamoku was one of the greatest athletes of his era. Always around beaches and pools, throughout his life he also saved many people from drowning.

 

I first read about Kahanamoku in a guidebook praising the popular Honolulu restaurant that he owned, Duke’s Waikiki. Powerful local interests had always capitalized on Kahanamoku’s fame to promote Hawaii as a tourist mecca but frequently abandoned him to struggle for economic stability on his own. He opened Duke’s late in life as a way to supplement his income

 

Regina and I visited Duke’s. It has Kahanamoku memorabilia, including one of his large wooden surfboards. Outside the restaurant Regina took a picture of me in front of a giant wall photo of Kahanamoku poised to take a dive.

 

 

Gene Veritas, aka Kenneth P. Serbin, standing in front of photo of Duke Kahanamoku in Honolulu (photo by Regina Serbin)

 

I was intrigued by Kahanamoku. Returning home to San Diego, I wanted to keep alive the joy I had felt in Hawaii. Exploring Hawaiian culture and history, I thought, might build for me new dimensions of meaning and purpose.

 

Surfing king Duke Kahanamoku and aloha

 

I delved into journalist David Davis’ Waterman: The Life and Times of Duke Kahanamoku, the first comprehensive biography of Kahanamoku (and the source of my observations here). By coincidence, the moving documentary Waterman, based on Davis’ book, premiered in theaters in April. I saw it on opening day.

 

In Hawaii Regina and I were frequently greeted with “aloha,” and people used “mahalo” to say “thank you.”

 

As an official greeter of visiting dignitaries (including President John F. Kennedy) and global ambassador for Hawaiian culture, Kahanamoku spent his life spreading the spirit of aloha.

 

Davis writes that Kahanamoku “suffused” visitors “with aloha because he believed that promoting Hawaii was beneficial for fellow Hawaiians.”

 

 

Regina Serbin at Chief's Luau with flowers presented in celebration of our 30th wedding anniversary (photo by Gene Veritas)

 

Kahanamoku printed his personal philosophy on his business card:

 

In Hawaii we greet friends, loved ones or strangers with ALOHA, which means with love. ALOHA is the key word to the universal spirit of real hospitality, which made Hawaii renowned as the world’s center of understanding and fellowship. Try meeting or leaving people with aloha. You’ll be surprised by their reaction. I believe it, and it is my creed.

 

(I have also frequently encountered sincere hospitality in my years of traveling and residing in Brazil and other Latin American countries.)

 

Although highly competitive in athletic contests, Kahanamoku’s embodiment of aloha gained him a reputation as a humble victor and cooperative teammate.

 

He refused to respond to the many racist epithets he endured. He suppressed his feelings when personally attacked or taken advantage of by others so much that he developed ulcers.

 

Nevertheless, with his athletic prowess and aloha, Kahanamoku entered areas of society normally reserved for whites.

 

As Davis observes, “Many years before nonwhite athletes like Joe Louis, Jesse Owens, and Jackie Robinson fought racism with courageous performances, Kahanamoku was a groundbreaking figure who was able to overcome – some would say transcend ­– racism.”

 

The wisdom of a waterman and his people

 

For Native Hawaiians, Kahanamoku’s plight symbolized the unwanted but steamroller-like annexation of the independent nation by the U.S. (in 1893); the adulteration of the environment by settlers from the mainland; the imposition of mainland culture and language on the locals; and, ultimately, the commercialization of society in favor of tourism, plantation agriculture, and the establishment of Hawaii as a major military installation.

 

In the words of another fine documentary, Hawaii is a “stolen paradise.”

 

Not surprisingly, Kahanamoku’s extended family retained no ownership in Duke’s Waikiki, which expanded to include restaurants on two other Hawaiian islands and also in three California coastal cities.

 

Despite this history, Hawaii fortunately has maintained much of its connection to nature and cultural traditions. With aloha and their intimate ties to the land and water, Kahanamoku and his fellow Native Hawaiians (along with natives elsewhere) offer a connection to premodern humanity and the importance of solidarity.

 

That spirit resonates with the fight for human well-being fundamental to the Huntington’s cause. As I tweeted in March, “Fortitude, collaboration of #HuntingtonsDisease movement embody opposite of aggression of war in @Ukraine: caregiving, alleviation of suffering, and harnessing of science for cures. #IStandWithUkraine.”

 

A “waterman,” Kahanamoku felt most at home in the sea, the source of life and the substance inhabiting our inner parts.

 

In a time of global warming, political strife, and warfare, the world has much to learn from the wisdom of aloha and Hawaiians’ immersion in nature.

 

 

Kenneth and Regina Serbin with Waikiki Beach and Diamond Head volcanic cone in the background (family photo)

 

Negotiating the waves of life

 

Modern surfing emerged from Hawaii. The greatest surfer of his time and global popularizer of the activity, Kahanamoku did not see it as a sport. It was about his love for, and relationship with, the sea. And about pure fun.

 

“The best surfer out there is the one having the most fun,” he said. After World War II, with the worldwide explosion in surf culture, competitions, and surfboard technologies, Kahanamoku marveled at ­– and was deeply proud of ­– how it took hold. He did want to see it included in the Olympics, which finally occurred in the 2020 games.

 

I tried surfing once in my 20s but did not pursue it. At 62 and still healthy, and with the example of Kahanamoku, I have thought of perhaps trying again, if I can find a patient instructor!

 

More importantly, Dr. Gollop’s advice rings true: to stave off Huntington’s onset, I need to keep doing what I like ­– including exploring Hawaiian culture and history.

 

The thought of Kahanamoku flawlessly negotiating the waves on his board also reminds me of the need ­– with aloha ­– to find in life “the right balance between striving and chilling.”

 

This week I am balancing my disappointment over a professional roadblock with the joyous celebration of Bianca’s graduation from the University of Pennsylvania.

 

I hope that those of us in the Huntington’s community and beyond can all learn to surf through life like Duke Kahanamoku ­– and always with aloha.

 

Regina (left), Bianca, and Kenneth Serbin during graduation weekend at the University of Pennsylvania in Philadelphia (family photo)

A proud Huntington’s disease gene carrier’s message to his ‘miracle baby’ daughter on her senior year in college

 

When I tested positive for the Huntington’s disease genetic mutation in 1999, at 39, I was convinced I was doomed to repeat my HD-stricken mother’s onset of symptoms in her late 40s.

 

I had tested because my wife Regina and I wanted to plan for children, who, if I had the mutation, would also have a 50-50 chance of inheriting it.

 

We decided to have a child before the availability of preimplantation genetic diagnosis (PGD), which involves in vitro fertilization of embryos without the mutation. So, we had our daughter Bianca tested in the womb. Her negative result in early 2000 was one of the happiest moments of our life. She was our “miracle baby.”

 

Now, 21 years later, Bianca has started her senior year at the University of Pennsylvania, where she is finishing a U.S. history honors thesis. She has flourished in her classes and successfully taken on several leadership roles.

 

Bianca understood from about the age of two that her grandmother was ill with a genetic disease. HD transformed my mother into a mere physical and mental shadow of herself, taking her life at 68 in 2006. Four years later, when Bianca was 9, she learned that I, too, was at risk but that she was not.

 

I have been extremely lucky. I am almost 62 and was found to have no HD symptoms at my recent annual neurological checkup. I have perhaps benefited from the positive action of modifier genes and a far greater opportunity than my mother had – we had never heard of HD prior to her diagnosis – to prepare for the disease.

 

As Bianca navigates the challenges of senior year and prepares for post-college life, I want to provide her with a message of hope, challenge, and some of the wisdom I have picked up along my own life’s journey, including our family’s struggle against Huntington’s. My letter to Bianca follows after the photo below.

 

Regina Serbin (left), Gene Veritas (aka Kenneth P. Serbin), and Bianca Serbin at the Edge sky deck during a visit to New York City in August 2021 to celebrate Bianca's 21st birthday (photo by Devon Riley)

 

Dearest Bianca,

 

When you graduate next May, you and your classmates will come of age at a time of immense challenges.

 

I am impressed with how you (and so many other students of all levels) have shown great fortitude and flexibility when forced into the new reality of online learning and social distancing during the monumental disruptions of the COVID-19 crisis.

 

I was happy to see that this semester Penn has moved students back into the classroom, allowing you to recover some of the lost joy of the college years.

 

With the rapid development of highly effective RNA-based vaccines, many of us are reaping the fruits of the biotechnological breakthroughs of our era. Researchers are also exploring a variety of such genetics-based approaches as potential Huntington’s treatments. Because many of these advances promise to change our very nature, they will pose ethical dilemmas.

 

Our family has lived this in the flesh. The biomedical revolution made it possible for you to know your life will be free of Huntington’s. However, as you have learned, being HD-free does not mean being challenge-free. Far from it!

 

But the freedom from HD has enabled you to plan a life in which you can strive for academic and professional excellence, and to develop your personal qualities.

 

As you venture forth, remember always that you’re not going it alone. You can rely on others, just as you should be available to support others. Life is a collective endeavor, as our family has learned so well from the fight against HD. As I always tell people dealing with the initial shock of discovering Huntington’s in their families, “together we will beat this disease!”

 

In your drive for personal success, cherish the preciousness of time, as I have learned to do in confronting the fears of HD. Use ambition to push ahead, but don’t let it dominate your inner good. Always make time for family and friends.

 

Take time to meditate and cultivate your spirituality, because I believe that we all have such a dimension, independent of any belief system or organized religion. As you have done at Penn, find ways in your life to connect to something larger than you.

 

Bianca, I’m elated with how we have come to share many passions: for writing, the study of history, historical movies (especially war films), music, our dog Lenny, and our family.

 

Because of HD, your grandmother could barely hold you as a baby. Your “HD warrior” caregiver grandfather loved you deeply. I wish they could have shared your college years.

 

I have not wanted you to worry about me getting HD, which is a major reason that I have strived so hard to maintain good health – and to support the search for treatments that could save me from HD’s inevitable though often unpredictable symptoms.

 

You and Mom have joined me at Hope Walks and other fundraisers, and in 2017 you gave up the chance to attend your junior prom to take part in Pope Francis’ special audience with the HD community in Rome. I so deeply appreciated having you by my side during that breathtaking moment.

 

I am thrilled and thankful to have the clarity of mind to enjoy your progress towards graduation. You have made me deeply proud.

 

Because of our and so many other families’ dedication to the HD cause, and also thanks to the researchers, I remain ever hopeful for an HD treatment in my lifetime. If that moment comes, I know that no matter where you are geographically and professionally, we will celebrate with tears of joy.

 

I hope HD strikes me minimally and very late in life, as I have seen in some cases. Together our family has seen many people with HD fight tremendously to overcome the disease, and their caregivers devote every ounce of strength. As it has throughout our journey, the hope for both my good health and the arrival of treatments will continue to sustain us ­– even beyond the start of any symptoms that might occur.

 

No matter what difficulty, please remember that I have always treasured our great moments together and watching you grow as a person.

 

No one knows what tomorrow will bring. In this moment, let’s cherish the positive, including the fact that you, Mom, and I are healthy. As your senior year progresses, I want to celebrate our joy together as you prepare to graduate.

 

Raising you has brought Mom and me greater meaning and purpose – and, above all, lots of love to share.

 

Healthy and ambitious, you are poised, with your generation, to leave your mark on the world.

 

Congratulations on your senior year! Enjoy the ride!

 

Love,

 

Dad

 

 

 

The Serbin Family Team of the Huntington's Disease Society of America San Diego Chapter's  2014 Hope Walk: from left to right, Dory Bertics, Bianca Serbin, Jane Rappoport, Gary Boggs, Yi Sun, Kenneth Serbin, Regina Serbin, and Allan Rappoport (photo by Bob Walker)

My arduous, lucky, and enlightening journey since my mother’s death from Huntington’s disease 15 years ago

 

February 13, 2021, will mark fifteen years since my mother Carol Serbin died in 2006 after a two-decade fight against Huntington’s disease. She was 68.

 

Recalling her struggles and taking stock of my own predicament as an HD gene carrier have stirred me to reflect on my arduous, lucky, and enlightening journey since her death. Greater maturity and experience have also afforded me a deeper perspective on the HD cause as a whole.

 

My mother was diagnosed with HD in 1995, just two years after the discovery of the huntingtin gene. That breakthrough permitted the development of a genetic test confirming passage of the disease from one generation to the next. However, in retrospect, her symptoms probably had begun in the late 1980s, when she was in her late 40s.

 

The arduous years

 

Given Carol’s inexorable physical, cognitive, and emotional decline and the lack of treatments, in July 2005 my “HD warrior” caregiver father Paul Serbin sadly concluded that she needed 24/7 care in a nursing home.

 

Her move to the nursing facility greatly eased the caregiving burden on my father, although he faithfully visited her daily, still spoon-feeding her as he had done at home.

 

It also freed him to travel from their home state of Ohio to spend Thanksgiving of 2005 with my wife Regina, our five-year-old daughter Bianca, and me at our place in San Diego.

 

“I didn’t know how much I loved your mother until these past few years, taking care of her and seeing how much she has lost,” my usually stoic father confided in me.

 

Paul Serbin pushing Carol Serbin in wheelchair (photo by Gene Veritas, aka Kenneth P. Serbin)

 

From my standpoint, my mother was descending into an HD hell. Psychologically, this became the roughest period of my life. Not only was she was dying. I, too, had tested positive for the HD gene in 1999, so watching her decline was like “looking into the genetic mirror” that reflected my own future.

 

After my mother steadily lost the ability to swallow, in January 2006 I helped my father make the wrenching decision not to approve a feeding tube, which would at best have prolonged her physical life but left her bedridden, unable to communicate.

 

On the weekend of January 28-29, 2006, with my mother in hospice care at the nursing home, I flew to Ohio to visit her for what I knew could be the last time. With almost indescribable emotion, I said good-bye to my mother and, once again, gazed into the genetic mirror. This time it revealed a practically lifeless individual, barely able to move and unable to speak (click here to read more).

 

After that visit, and then learning that she had died in her sleep the morning of Monday, February 13, 2006, I felt utterly distraught about my gene-positive status.

 

In the months after her passing, I felt so terrified about getting HD that I began to act out some of the disease’s physical symptoms in front of my wife and daughter. I could not write anything in this blog for eight months.

 

My father, suffering his own severe cognitive loss likely accelerated by the loss of his wife, died on September 25, 2009, with a broken heart.

 

Tons of luck, and some positive strategies

 

I have now been without parents so long that memories of them feel like a distant past.

 

At 61, still without any apparent symptoms of HD, I feel extremely lucky. Each moment of good health is a blessing.

 

I have practiced personal and social enrichment, which scientists have recommended.

 

I have the benefit of a stable, good-paying job. Also, as the centrality of my parents faded, my roles as husband and father became paramount. Bianca became the center of our lives. Regina’s and Bianca’s love and support have proved crucial.

 

Also, because Bianca tested negative for HD in the womb, we have averted enormous health, financial, and psychological burdens (click here to read more).

 

The Serbin Family Team of the 2014 HDSA-San Diego Team Hope Walk: from left to right, Dory Bertics, Bianca Serbin, Jane Rappoport, Gary Boggs, Yi Sun, Kenneth Serbin, Regina Serbin, and Allan Rappoport (photo by Bob Walker)

 

I also exercise regularly, meditate daily, take medications to control depression and anxiety, and have a solid, long-term relationship with a psychotherapist.

 

I cannot be sure whether any of these things have staved off HD, but they generally bolster health.

 

Significantly, scientists have discovered very powerful explanations for why I am might have stayed asymptomatic so long: genetic factors, including modifier genes, that delay disease onset.

 

Gaining enlightenment about HD

 

Becoming enlightened about HD research and building bonds with scientists have reinforced both my advocacy and personal enrichment.

 

As a college professor, HD advocate, and explainer of the science ­– both in this blog and in interviews with researchers – I have had a privileged window on the quest for treatments. I have thoroughly enjoyed this work.

 

Moreover, I have gained great satisfaction in encouraging HD families to participate in research studies, platforms like Enroll-HD, and clinical trials.

 

Witnessing the progress towards treatments has also boosted my hope to participate someday in an HD clinical trial and, ultimately, enjoy the benefits of the first wave of effective treatments.

 

Overall, I believe that becoming enlightened about HD has helped me become a better person.

 

Pride

 

My devout Catholic parents – when I was a child, my father especially had hoped that I would become a priest – would have been especially proud of my family’s participation in #HDdennomore, Pope Francis’ special audience with the Huntington’s community in Rome in May 2017.

 

The pope declared HD to be “hidden no more” from the world.

 

I presented Pope Francis with a framed photo of my parents, well-dressed and smiling in a formal pose, taken after my mother had already been diagnosed with HD.

 

“My mother died of Huntington’s,” I told the Pope in his native tongue of Spanish. “My father cared for her for 20 years.”

 

In September 2017, I gave a presentation on #HDdennomore at my workplace, the University of San Diego. In February 2020, just before the COVID-19 crisis hit, I organized a screening of the poignant documentary on the papal audience, Dancing at the Vatican. It was well-attended by members of the local HD community.

 

Pope Francis displayed great love and mercy for our community.

 

Photo of Paul and Carol Serbin presented to Pope Francis by Kenneth Serbin, May 18, 2017. Photo taken shortly after Carol's diagnosis for Huntington's disease in 1995 (family photo).

 

Tributes, and imagining a world without HD

 

In many ways, since its inception sixteen years ago in January 2005, this blog has paid tribute to my parents. I have also honored the lives of other HD-affected people who valiantly fought against the disease such as Steve Topper and Harriet Hartl.

 

In these years since my mother’s departure, I have often wondered what our lives would have been like without the scourge of HD. This April 30, my mother would have turned 84 – within a plausible lifespan nowadays.

 

How wonderful it would have been had my mother – who could not interact with Bianca as a baby and toddler – been able to see her granddaughter reach college and to see Regina and me next year mark 30 years of marriage.

 

I can forge the greatest of tributes to my parents by continuing to nurture my health and hopefully secure a longer life so that I can grow old with Regina and see Bianca go out into the world.

 

When we learned of my mother’s diagnosis in 1995, there was no real hope of an HD treatment. However, since her death, research and the advent of clinical trials have brought unprecedented hope. As we’ve seen in response to the coronavirus pandemic, science can make great strides.

 

In unison with others, I can honor my parents by renewing the fight for Huntington's treatments so that thousands of families around the world can be freed from witnessing loved ones die early deaths.

Happy Thanksgiving! And hail to the pharmaceutical and biotech industries – and the scientists!

Thanksgiving this year is going to be radically different for many Americans, including my family.

 

I will celebrate my favorite holiday just with my wife Regina, home in San Diego.

 

As it has for many Americans, the COVID-19 pandemic has prevented us from hosting our usual small group of friends.

 

After eating a healthy brunch, we plan to have a Zoom call with our HD-free “miracle” daughter Bianca, a junior history major at the University of Pennsylvania. We are ever thankful that Bianca did not have to face the devastating possibility of juvenile HD. We will miss her, but are reassured knowing that she will spend the day with her boyfriend and his immediate family in the East.

 

We also hope to Zoom with some of our local friends. 

 

However, despite the terrible pall cast by the pandemic over the 2020 holiday season, I feel extremely optimistic that researchers will find a highly effective vaccine for the coronavirus.

 

The announcements of preliminary data by Moderna and the team of Pfizer and BioNTech revealed that their vaccine candidates reduced COVID-19 infections by 95 percent in clinical trials.

 

Dr. Anthony Fauci, the director of the National Institutes of Allergies and Infectious Diseases (NIAID), described the Moderna data as “stunningly impressive,” noting that he would have settled for 70-75 percent efficacy in a vaccine.

 

“It is really a spectacular result that I don’t think anybody had anticipated would be this good,” Dr. Fauci said. He had similar praise for the Pfizer/BioNTech data.

 

Both of these trials use genetic approaches: they introduce the virus’s own genes into cells to provoke an immune response.

 

According to the New York Times’ Coronavirus Vaccine Tracker, several dozen other companies have embarked on clinical trial programs using some form of approach based on genetics or other cutting-edge strategies. Only ten projects are making vaccines using the traditional approach of injecting weakened or dead coronaviruses.

 

In all, scientists are testing 54 vaccines in clinical trials, and at least 87 more are under investigation in animals.

 

Genetics-based approaches are familiar to the HD community, where researchers have investigated the potential of gene silencing drugs for more than a decade. Researchers in the lead program, Roche’s historic GENERATION HD1 Phase 3 clinical trial, hope to analyze data in 2022. 

 

When I heard of the initial reports of Moderna’s genetics-based approach, I felt deeply confident that humanity would ultimately defeat the coronavirus. 

 

The potentially record speed in getting a vaccine to the world is testimony to the ingenuity, dedication, and focus of the biotech and pharmaceutical industries, which I have observed with deep interest in my nearly quarter century as an HD advocate and student of the science – and as a writer summarizing the science in simple terms.

 

In October, posting on Facebook an article on the bold Triplet Therapeutics clinical trial program – yet another genetics-based effort – I wrote the following: “Hail to the many imaginative and hard-working companies in America’s pharmaceutical industry!”

 

I also salute the scientists involved, and the many pharmaceutical and biotech firms of other nations engaged in the fight against COVID-19 and HD.

 

Also, we must not forget the millions of doctors, nurses, and other healthcare workers and first responders who have heroically attempted to hold the line against COVID-19, thus giving the researchers the time necessary to develop the vaccines.

 

Thanksgiving is our quintessential American holiday. This year, with the pandemic, it takes on a global significance. Across all cultures and nations, the virus has led us to realize once again our common humanity – and the collective efforts needed to safeguard life for all.

 

 

Photo by Bianca Serbin, taken in fall 2009 at the San Diego Botanic Garden (click here to read more).

Free from the threat of Huntington’s disease, our ‘miracle baby’ turns 18

I dedicate this article to my daughter Bianca Serbin.

In June, our “miracle baby,” who tested negative in the womb for Huntington’s disease in 2000, will graduate from high school and turn 18. In August, she will enter the University of Pennsylvania, to study in its College of Arts and Sciences.

It is a watershed moment, a milestone I once feared I would not reach, and a sign—though hardly a final one—that our daughter is on the road to adulthood with her family intact.

Because I inherited the HD gene from my mother, who died of the disease in 2006 at age 68, I will inevitably develop symptoms. At 58, I’m well beyond my mother’s age of onset. Each day of health is a blessing and a privilege, as I witness so many of my affected “HD brothers and sisters” struggle with the disabling symptoms.

Scientists strive to understand why people like my mother and me, with the same degree of genetic defect, become symptomatic at different ages. Although there is no scientific proof, doctors and scientists have told me that leading an enriching life – and treating my health carefully – has helped me stay healthy.

I agree. Watching HD rob my mother’s ability to walk, talk, and care for herself, I could not imagine reaching this point free of the disease’s classic symptoms. Joining my wife Regina in guiding Bianca to adulthood has provided me with a deep sense of purpose, enjoyment, and pride.

With Bianca, we have also faced crises: being HD-free is no guarantee of perfect health or a worry-free life for her. As a result, we have become closer as a family, and Bianca has matured.

Now, as Bianca prepares to enter the next stage of life, I am deeply relieved.

I had feared not being able to watch her graduate from high school. As educator parents valuing quality schooling, we sacrificed financially to put her in a top private high school to give her the best chance to succeed in life. I had worried that, if disabled by HD, I could not help pay the bills and save for college.

I also feel a deep sense of pride, satisfaction, and accomplishment: I have fulfilled some key responsibilities as a father, handing Bianca the baton of life.

Bianca Serbin (family photo)

Because of the psychological trauma of testing Bianca in the womb, Regina and I decided against further children. Raised as an only child, Bianca needed to overcome shyness and social isolation. Her high school’s strong emphasis on academics and leadership helped her blossom in these areas.

Bianca and her generation will face immense challenges beyond the first-order responsibilities of learning, growing, and finding their place in the world. They are bequeathed such daunting social problems as gun violence, inequality, anti-democratic political movements at home and abroad, global warming, and nuclear proliferation – challenges my generation has failed to adequately address. They will need to exercise great leadership and form new social movements.

I believe they will. I am impressed with, and proud of, young people such as the Parkland, Florida, shooting survivors who have organized politically, refusing to accept the tiresome and dangerous status quo on gun violence. Their movement has the potential to impact society the way the civil rights and anti-war movements of the 1960s did. Bianca and her schoolmates joined students around the country in the local-level protests against the violence.

Raising a daughter in the era of #MeToo produces great angst. Bianca will need to be strong and independent as she navigates new challenges and, as in the fight against HD, she will need to find allies.

I’m confident that, no matter what path she chooses, Bianca will help make the world a better place.

Gene Veritas (aka Kenneth P. Serbin) with daughter Bianca (family photo)

Previous generations did not have our options. After the discovery of the HD gene in 1993, Regina and I became part of the first wave of couples testing babies in the womb, and later using preimplantation genetic diagnosis, to safeguard our children from the disease.

Regina and I were especially adamant about testing because, in a cruel twist of HD, men can pass on an even greater level of genetic defect, leading some children to develop the juvenile form of the disease.

Our generation of HD families have also become more outspoken about HD, a disease so terribly hidden and stigmatized in the past. It’s still that way for many families here and around the world.

I’ve always answered Bianca’s questions about HD, wanting her to learn about the topic with full transparency, to prevent the harmful effects of denial. She was first exposed to HD at the age of two by learning that her grandmother was ill with a “boo-boo on her brain.” At age nine, she learned that I carried the gene – but also that she did not.

Since childhood, Bianca has participated in HD fundraisers and other events. Recently, she has also volunteered for the local chapter of the Huntington’s Disease Society of America.

Bianca reads this blog regularly, a way for her to deepen her understanding of HD and to tighten her bond with me. I know that she loves me and is deeply concerned about my risk for HD.

Bianca, San Diego Chargers tight end Antonio Gates, and Gene Veritas at an HDSA-San Diego fundraiser, 2008 (family photo)

Throughout Bianca’s senior year, Regina and I have begun to brace ourselves for the empty nest syndrome.

At the same time, we’re very excited for Bianca. I’m looking forward to our family trip to Philadelphia to install her at Penn and help her transition to this new phase in her life.

Meanwhile, on the HD front, much work remains to be done: along with thousands of other Americans, I still face the threat of HD. We need to realize the dream of effective treatments – perhaps even a cure – that would allow me to live to a ripe old age and, with Regina, continue to enjoy the next stages of Bianca’s life.

Kenneth, Bianca, and Regina Serbin after Bianca's induction into the Cum Laude Society (family photo)

Passing on the Huntington’s disease advocacy baton to the next generation

In the fight against Huntington’s disease, a familial condition that can plague generations, each generation must pass on the advocacy baton to the next.

I feel as though I've started my handoff to my daughter Bianca.

HD has profoundly affected my family in multiple ways. My mother was diagnosed with HD in 1995 and died from it in 2006 at age 68. I tested positive for the genetic defect in 1999, and have been racing against the genetic clock ever since. Bianca, thankfully, tested negative in the womb in 2000.

At 57, an age when my mother had chorea (involuntary movements) and severe cognitive loss, I am blessed to have remained symptom-free. However, because HD gene carriers inevitably develop the disorder, I know that, unless scientists discover an effective treatment, I will someday become ill.

HD families must stick together to confront the devastating symptoms, caregiving demands, and difficult challenges the disease brings, but it’s by no means easy.

Avoiding the denial that prevents family solidarity and feeds ignorance about the disease, my wife Regina and I have revealed to Bianca at appropriate moments how HD has impacted our family. We have done so gradually but always honestly. Often, we spoke about HD in response to her questions. (To read more, click here and here.)

Gene Veritas (aka Kenneth P. Serbin) with daughter Bianca and wife Regina (2016 family photo)

A biology assignment

Now 16, Bianca is a healthy and vibrant high school junior. She has frequently read this blog and over the years has participated in several fundraising events for the San Diego chapter of the Huntington’s Disease Society of America (HDSA-San Diego).

Her gene-negative status means that the threat of HD stops with me. Of course, she is concerned about my health, and she is deeply saddened by the plight of juvenile HD patients. She has volunteered for HDSA-San Diego.

Last week she worked on an assignment for her high school biology class titled “A Day in the Life: A Study of Human Genetic Disorders.” From a list of diseases, she chose HD. Drawing on medical and scientific sources, she wrote a four-page summary of the biology of HD, symptoms, its rare status, age of onset, and potential treatments.

Life with HD

For the required creative component of the assignment, Bianca wrote an imaginary patient journal titled “Life with Huntington’s Disease,” from the perspective of this blog, her conversations with me, and her observations over the years.

Bianca captured the sadness, anger, and fear associated with HD. In one excerpt, she wrote:

Today was a bad day. It has been hard lately to ignore HD. I wish I could say I don’t think about it all the time, but I do. Especially now that Mom is getting worse. She can barely walk at this point. Dad helps her eat, shower, use the bathroom, and dress herself. It’s hard for me to see my mom act in a more childish manner than my three-year-old daughter. It’s hard for me to see my mom this way because I know that I will one day experience the same thing. I feel exceptionally lonely nowadays. I know others who struggle or who have struggled to take care of someone with HD, but I somehow feel like my situation is unique, somehow worse than everyone else’s.

However, Bianca also portrayed the strength and hope of HD families and advocates, writing:

Perhaps the best part of having HD is getting to meet so many people who are involved with the cause. The Huntington’s Disease Society of America is one of the most supportive groups of people I have ever worked with. Few know the struggle that accompanies this disease. It’s nice to be able to talk to people who do, people who have lost loved ones, as I have, to this horrible sickness, people who, like me, are at risk.

Bianca Serbin (photo by Gene Veritas)

Honesty and family solidarity

Reading Bianca’s words, I know that HD is forever seared into her consciousness.

I was deeply moved by her decision to write about our family’s struggles with Huntington’s. I am very proud of her.

The experience reinforced the necessity of accurate, patient, and, above all, honest communication within Huntington’s families.

In our conversations last week many powerful memories came to the fore. Bianca told me that one of her earliest recollections was of us visiting my parents’ home in Ohio (she was three) and seeing my father and me help my mother after she fell on the floor.

Bianca learned from me last week how the disease could potentially affect other members of our extended family.

As I looked at her, I felt an immense sense of relief that she is HD-free. I also felt wonderful anticipation: in less than a year she will be applying to college.

‘Don’t worry for now’

At the conclusion of our conversation the night before Bianca turned in the assignment, we discussed the fact that the greater the genetic defect (gene expansion), the earlier the onset.

We inevitably focused on my potential age of onset, ranging from the late forties to the late sixties.

“Hopefully I will get sick only in my late sixties,” I told Bianca.

“Or maybe you’ll get sick even later – or not at all!” Bianca responded optimistically.

We discussed the hope of clinical trials.

A bit later, determined not to let all this hinder her life plans, I told her gently: “Don’t worry about HD for now. That’s something off in the future.”

Bianca and Kenneth Serbin (family photo)