PLV Scholarship Winner: Iliana Goodhew on Immigrating to America and Her Father’s ALS

Due to generous donations from my sister Michella, my aunt Ginny, and my father Tom, I was able to kick off the Patricia Lynn Vermeulen-Tomocik (PLV) Scholarship’s first ever awards season by helping to select not just one, but three winners. The PLV Scholarship was founded in memory of my mother Patricia (1952-2014), whose giving spirit spread love, beauty, and happiness to those who knew her, those people who were made to feel special and appreciated by her genuine warmth and compassion.

When the Scholarship Board reviewed applications last May, there were several outstanding candidates worthy of recognition. Board members, however, unanimously agreed that three applicants stood out as particularly exceptional. The stories of these three young women were strikingly well-aligned with the ideals that inspired the creation of the scholarship: all had confronted unique life challenges that no teen should have to endure but had used them as pathways toward growth, demonstrating hope and resilience during periods of personal struggle. They had not only navigated these hurdles with maturity and fortitude, but had proceeded to direct their energies outward, using these transformative events to improve the lives of others, and thus to experience healing themselves.

The first of the PLV Scholarship winners to receive her award at the Vermeulen Ranch Center was Iliana Goodhew, a recent graduate of Mission Viejo High School headed for Cornell University in the fall. Iliana’s family moved to the US from Colombia when she started high school for the same reason so many Americans have chosen to immigrate to this country: opportunity. Starting high school can be a rough transition for any American girl; but having to adapt to a foreign culture, gain proficiency in a new language, and handle the high cost of living poses additional challenges that are easy to take for granted unless you yourself have been there.

Assimilation, however, was far from the biggest obstacle that Iliana and her parents had to face. Shortly after settling down in Southern California, Iliana’s father received the devastating news that he had been diagnosed with amyotrophic lateral sclerosis, better known as ALS. This condition is a progressive neurodegenerative disease that rapidly attacks motor neurons, the cells that control voluntary movement. There is no cure, and the average survival time post-diagnosis is about three years. On top of balancing the tremendous demands placed on successful, college-bound high school students in America — an AP- and IB-laden academic course load, an unending barrage of standardized tests, an impressive number of extracurricular activities, community service involvement, part-time employment, the lengthy college application process, and the emotional exertion inherent to belonging in an adolescent peer group — Iliana helped to care for her father throughout the duration of his illness as he gradually lost his powers of speech and movement. She also assumed greater household responsibilities to assist her family during this extraordinarily difficult time.

What emerged from these circumstances was the young woman whom my fiancé Shawn and I had the pleasure of meeting on a cloudy Tuesday afternoon in San Juan Capistrano last June: an authentic, sweet-natured, soon-to-be college freshman with an uncommon sense of humility and deeply felt gratitude. Here was a young person in possession of tremendous inner strength, a survivor who chose to focus not on the adversity she had undergone, but on the opportunities she had been given to thrive in this country thanks to the sacrifices of her parents. Iliana told me that she resolves to honor her father’s legacy in the way she chooses to live her life. She started The Environmental Club at her high school since her British father instilled a love of nature in her. In addition, she is determined to take a stand against the disease that ended his life and, in 2018, began working with the University of California at Irvine’s ALS and Neuromuscular Center to research ways of halting the progression of the illness. Iliana intends to study Biological Sciences at Cornell with a possible minor in Environmental Sciences and Sustainability. Her goal is to eventually obtain a PhD so that she can dedicate her career to scientific research that could prevent human suffering and the loss of life inherent to incurable disease.

Each of the PLV Scholarship winners has hard-earned wisdom to share with the broader world about the themes and events that shaped her life. What follows are some interview questions I posed to Iliana:

Although immigrant children and teens enter a new country to begin new lives, their ethnic and cultural identities are forever shaped by their countries of origin. What are some of the ways that you celebrate or honor your Latin@ roots as a US citizen originally from South America?

Iliana: First, I should say that even while living in Colombia, I didn’t really feel like I was part of any culture specifically, but part of a blend of cultures that created my own. This might be because I grew up under two very different cultural influences, as my mom’s side of the family is Colombian while my dad’s side is British. That said, I think what really stood with me was my ability and love to adapt and learn from other cultures in such a way that each new situation added to my own personal and multicultural identity formed and composed of many different values, customs, and perspectives on life.

Some of the main ways I celebrate my South American culture are through food and valuing our sense of community. My family and I rejoice at every meal time as we all sit down at the table together and connect by talking about our experiences that day and about life, through eating mindfully, and by just enjoying and being grateful for each other’s company. This is a very valuable custom for me because it strengthens our relationship and helps us to de-stress and find home in our family. After all, family will be there for us always, so we might as well use the time to connect and form healthy bonds rather than to fight and try to tear apart from what is permanently connected to us.

Speaking from your own personal experience, what are some of the barriers immigrant children and teens face when coming to America? Are these barriers always visible to others?

Iliana: Immigrant youth like me, no matter their country or culture of origin, face great challenges when coming to the US. One of the most troublesome is discrimination and bullying that may come with it. Children who stand out because of their cultural and behavioral differences are often targeted by other children because they do not follow what everyone in a culture has to follow, so bullying may arise out of some kind of disgust or jealousy. The cultural differences also lead an immigrant child to possibly get into conflict or uncomfortable situations because of being misunderstood or misunderstanding others due to language difficulties, slang, the nature of jokes, body language, etc. Finally, not every child goes through conflict with other people, but it is often that we as immigrants battle conflicts with our inner selves because the pressure to accommodate to a culture or customs we don’t always agree with compared to our own can cause us to have a weak sense of identity, reject our origin, and even to develop different levels of mental health issues.

What are some words of wisdom you would impart to young girls hoping to become scientists someday?

Iliana: For those girls who want to become scientists in the future like me, no matter who you are, be yourself, you make the limits. If others say no, as long as you are doing it morally, you say YES! And keep going, don’t give up. Make your own path and own it. Be proud of your achievements, with humbleness, and gratefulness every step of the way. Make your own history. Be respectful, moral, and polite. But also show your inner fire for learning and identity, be empowered by who you are as a beautiful, unique being. Be honest, genuine, and have your work and actions be ethical, and have integrity always. Give the best of yourself on every single thing you do and say. Keep your word and prove that you are to be trusted and you can do any work they present you with. Have great commitment and dedication to whatever interest you pursue. Live by your morals and be strong, for people may sway you away from them if you are not alert. Get involved by doing your own research on whatever interests you. Show interest to your teachers, and ask them questions no matter how simple or complicated they are. And finally, aim for your dreams, and from there create a realistic step-by-step plan of how you are going to achieve them. Best of luck, you can do this!

The PLV Scholarship Board was deeply saddened by the loss of your father to ALS, a terminal neurodegenerative disease; but we were also inspired by your steadfast resilience and your ability to honor your father through your actions. What are some words of advice you would give to children and teens struggling to come to terms with the illness or early death of a parent?

Iliana: I miss my dad, of course, and there are tears many times. But in situations like these where a loved one is suffering from a disease or has passed away, it is important to be strong and focus on the positives. So if you know someone who has an illness, love them, understand them, and be compassionate. And give the best of yourself so that the person can live as happily and comfortably as it is possible. Your energy, smile, and love will be much more healing than any drug can be! If your loved one has passed, you must think that our loved ones want us to be happy and live our own lives. No matter what your thoughts are about the afterlife, I think it is better to focus more on how they are now resting and are free from the unforgiving chains of the disease. Honor your loved ones by irradiating the good aspects you have learnt from them, and rest knowing that their soul is now free from a painful body, so they are ok and taken care of now. Finally, be patient with yourself, and give yourself the space to cry and get it all out. Your mental and physical health need to be balanced first in order to effectively help others.

Please tell us a little more about your initiative to participate in ALS research and how other teens can get involved in academic research while still in high school.

Iliana: My dad was diagnosed with ALS in 2016. This disease is commonly known as Lou Gehrig’s disease and is a disease which hasn’t yet been cured or its progression known how to halt. As devastating as this news was, my reaction was like other times I have faced challenges: I balanced myself first after the news, and then I read books and asked questions. The curious and scientific side of me was intrigued and wanted to know how the disease acts and how it originates. How does it make the motor neurons waste away? Why motor neurons? Why does it make effected neurons attack those adjacent to them? Why my dad?

From all of these questions, a research project was born, and so throughout that summer I frequented my local library to answer my inquiries. I quickly realized very little is known about the disease except its effects. I wasn’t going to give up though. I didn’t lose anything by asking, and my dad’s degrading condition pushed me on. Therefore, I looked for leading research facilities and found that the University of California-Irvine had a prominent ALS and Neuromuscular center. I didn’t realize before, but my dad went there for physical therapy sessions. I created questions using all the knowledge I had gained so far and organized them to make the time valuable for the researcher and me. Then, during one of my dad’s appointments, I told my mom, “I’ll be right back.” I dashed to the main desk and asked to talk with one of the researchers. After a vibrant exchange of ideas with the research coordinator, I was able to build a strong connection and gained access to data from trials. This also gave me a solid starting point from which to expand my research project with the skills I was developing.

To get involved, I recommend just going and talking about your interest with a researcher as I did, and start the conversation with where to begin with your research, where to access resources, how you can help the lab, and/or how you can train to one day become a researcher in the lab you want. If this conversation is not possible, then create a plan for you to do the research yourself and how to get more people such as friends, family, and teachers involved. Who knows, maybe one day the information you gather, connected and analyzed with a fresh perspective, may save someone’s life or provide a valuable guide for a group of researchers.

Sometimes when we lose someone we love, we endeavor to find ways to immortalize that person’s legacy. What are some of the ways your father’s influence both impacts your life and inspires you to impact the lives of others?

Iliana: I have beautiful memories of my dad, and his many wonderful qualities inspire me every day. These include his immense heart and love, ever-present kindness, compassion, smile that lights up others, hard work and determination to succeed, incredible strength, lack of complaining about anything, and his incredible care and support for me and others. These also include his patience, silence and reflection, connection to nature, and “down-to-earthness,” as well as his values of love, righteousness, and self-improvement. I can remember his ability to look past the dark sides that every human being has and to not let that get between his family and others. Traits such as his love of knowledge, value of education, immense patience and resilience, and understanding that his health was very important are what kept him well.

Moreover, I remember his adaptability to new environments and circumstances, readiness, alertness, clear mind during important or perilous events, independence, and resilience to get back up again from the negatives of life. He also had a steadfast mind and great intelligence. He gave very short and simple, yet very wise messages, as his observant and non-judging eyes helped him to understand the world better than many. I still rejoice every day for his adventurous spirit, love for life and nature, appreciation of the wonderful things in life, artistry and creativity, kindness, attention to details, understanding of everything on earth, and heart to help others and be there for them. He had a brave and knowing soul, reflecting on the pain in his life and working hard to improve himself, yet remaining humble and so that he mainly only showed his strong and peaceful self. Finally, I am so forever grateful for him giving his whole being, everything he could give and beyond, to me and everyone around him as we felt his immense, beautiful love and warmth, always and forever.

He went through SO much in his life, yet he always touched and inspired others wherever he went and filled them with peace, love, and understanding. I greatly admire my dad, and thinking of all his values teaches me and reminds me of where I came from, who I am, what I want to become, and how. His memory gives me strength every day to form my own path and know that the limit is what I make it. I keep going and give the best of myself for what I believe in and for the life I desire right now.