Our Journey Is Not Determined by Our Genetic Code

Our genetics are not written in stone. Who we are and who we will become is not a predetermined story coded in the proteins of our DNA. This may seem like a rewriting of the old nature versus nurture debate, yet I was recently reminded that we make our own path.

While speaking with my friend Matt Lafleur, a fellow columnist who writes for Friedreich’s Ataxia News, we shared our thoughts and discussed our perspectives on destiny and predetermination. When thinking of genetics, it turns out this is a reoccurring theme within the rare disease community.

Richard’s daughter, Rylae-Ann, continues on her journey making memories. (Photo by Richard E. Poulin III)

Nature vs. nurture

Nature versus nurture is an old philosophical debate. According to Psychology Today, the term was first used in 1874 by English scientist Francis Galton in his book “English Men of Science: Their Nature and Nurture.” However, the debate has roots as far back as ancient Greece, when Plato argued with Aristotle about whether nature played a more substantial role than nurture. A theory that spans the history of mankind must be a momentous topic.

As science progressed, the term genetics versus environment became more favored. Nature argues that genes and hereditary factors heavily determine our outcomes in life, whereas nurture claims our environment, experiences, relationships, and culture affect our outcome.

Recommended Reading

October 14, 2020 Health Insights by Brian Murphy, Ph.D.

My Child Has Been Diagnosed With AADC Deficiency, Now What?

First encounter with this dilemma

Before my daughter’s diagnosis with aromatic l-amino acid decarboxylase (AADC) deficiency, I didn’t give too much thought to this theory and just took the easy way out, saying it is a balance of the two. However, when a conclusive diagnosis came back stating that my 6-month-old daughter had a rare and life-debilitating genetic disorder, my mind hyperfocused on the word genetic.

Immediately, I began asking the doctor and researching online about the long-term prognosis. Statistics and scientific reports all pointed to a life of being bedridden and susceptible to life-threatening ailments, and the possibility that she wouldn’t make it past the age of 4.

With few options available and negative statistics showing a bleak future, we had no option but to dream big. It is in these situations that we have an opportunity to accomplish the impossible. My belief that my daughter’s genetics was a fait accompli evaporated. It is a good thing, because once my wife and I took destiny into our own hands, changes began to occur.

Our experience

We are given the power to determine our own destiny; every choice we make advances us into the future that we create for ourselves. Destiny, I believe, does happen. People, opportunities, and chances appear along our journey, but ultimately, we are given the power of choice.

Other than the statistics, there was not much available expressing what to do or what was possible. This wasn’t ideal, but we also didn’t face too much of anything telling us, “Don’t do that.” Having the autonomy to explore pushed my wife and me to be creative, search for alternative pathways, and write our family’s future.

How we changed our future

We moved to a new country to have an environment that was supportive of our daughters’ goals. This included a supportive employer, an inclusive school, and affordable paramedical therapies. Our new environment filled us with positive energy and new motivation.

The mind has a powerful ability to change our body’s health. Consider the placebo effect. Approaching life with an optimistic mindset creates better health and a clearer mind to better tackle extreme challenges.

Also important is surrounding oneself with a supportive social network to help take on the burdens. We are only human, and collaboration will always produce faster and better results. Friendships will be different than in the past, as they should be.

Diet — the fuel we need to perform work — can act as a form of treatment while providing a source of energy our body needs to cope and grow.

For our AADC-deficient children, we must create a lifestyle where they get to experience the world. Just because they have a rare disease doesn’t mean they are exempt from making memories. Through play-based learning, they can experience the joys of childhood while making progress.

Rylae-Ann explores an art installation as her parents look on thinking of the deeper meaning of this chance encounter. (Photo by Richard E. Poulin III)

Our journey

Our journey through life is a collection of experiences resulting from our choices. Unexpected opportunities arise, and random chance encounters occur. Yet, we must make decisions based on what is before us. Being mindful of our genetics and what we are predisposed to is data to help us make better decisions.

Sometimes we are limited in our choices. However, by thinking out of the box or viewing problems from a different perspective, we can still arrive at our desired destination despite genetics and statistics saying otherwise.

The more we challenge statistics, stereotypes, and conventional wisdom, the more we realize that the impossible is just something that hasn’t been achieved yet. Our genetics are a part of us, but they are not a predetermined outcome of our journey of life.

Note: AADC News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of AADC News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aromatic l-amino acid decarboxylase deficiency.