Alexander Thomas & Family
We are now Thryv.
LQT Therapeutics Inc. has changed its name to Thryv Therapeutics Inc.
Alexander Thomas is a 17 year-old dance prodigy born in South Florida to parents of Haitian descent. At age three, noticing Alexander’s natural affinity for dance, his mother, Palmire, enrolled him in the That’s Dancing studio in Lake Worth, Florida, where he has been dancing for the past 14 years. At age nine, Alexander joined the Fusion Force Dance company, and his career has continued to blossom, including performing during the 2020 Super Bowl LIV Halftime Show and being profiled in Nike’s 2020 Black History Month video, Common Thread: Alex & Ingrid.
Alexander Thomas also has Long QT Syndrome, a condition shared in his family by both his mother, Palmire, and his brother, Adrien.
The three of them recently took the time to share their experiences and further connect with the LQTS community.
When and how were the three of you diagnosed with Long QT Syndrome? What led to the initial diagnosis?
Palmire: “In 2013 I went in for my annual physical. My doctor decided to do an EKG just to have a baseline, given that my mother had an extensive cardiac history. Upon looking at my EKG, he immediately said something was wrong and sent me to see a cardiologist. After a series of tests, my cardiologist said my EKG showed I had Long QT Syndrome. In turn, he referred me to see an electrophysiologist, where I underwent hours of diagnostic testing and genetic testing.
“Three months later I was called and told it was confirmed I have Long QT Syndrome. I was devastated.
“Shortly after, I was told my children needed to be tested. My three children, Gabriela, Alexander and Adrien - at the time aged 4, 10 and 14 - were tested. Two months later I was called and told the boys were positive, but my daughter was not.
“I literally felt like our life was over.
“I was told repeatedly that Long QT Syndrome was a rare disorder, and after we were sent to see genetic counselors, the boys and I were placed on a beta blocker. Additionally, I was scheduled for a defibrillator, which was implanted internally in 2013. Adrien and Alexander obtained portable defibrillators to carry everywhere they go.
“I had to hold meetings with their schools to ensure they had enough defibrillators, and that the teachers and staff were sent for training to know how to use the device as well as learn CPR. Alex, of course, was a dancer, and Adrien played soccer on a travel team. Our doctors wanted the boys to give up both. Adrien was older and read a lot about Long QT and decided himself to stop playing soccer. Alex refused to give up dancing. He stated this was his dream. I met with his dance studio and explained Alex’s situation, and they immediately ordered a portable defibrillator and sent their teachers for CPR training as well.”
How did being diagnosed impact you individually? How did you feel, and what were the emotions you experienced? How has it changed over the past seven years since your initial diagnosis?
Palmire: “When I was first diagnosed, I was 34 years old, and I had no symptoms. When I received my diagnosis, I literally felt my whole life was over. I had never heard of this disorder. Actually, no one in my family or circle of friends had. I was afraid to die, and I cried every night in fear of falling asleep. My husband was very positive. He supported me through all my sleepless nights.
“When I was told I needed to get a defibrillator placed, I was beyond upset, and I refused at first. My cardiologist literally insisted. He and my electrophysiologist both insisted. It was for my safety and to protect me and save my life.
“Two months later the boys were diagnosed. I felt responsible as they inherited this from me. My family was asked to get tested - my parents, siblings and first cousins - and they all refused. I put a baby monitor in the boy’s rooms and would check on them constantly in the middle of the night. I was paranoid, not only afraid of me dying, but my boys as well. I felt like I stopped living.
“The boys’ cardiologist was amazing. He provided me with his cell phone number and told me I could call anytime. Seven years later, I'm still super nervous. Adrien is now away at college. We must communicate verbally and we Facetime every single day. We never skip any doctor appointments. Alex, with every one of his dance shows and competitions, my heart races, and I literally feel like I can't breathe - I get so emotional praying nothing happens to him on that stage.
“Seven years later, I am a lot more positive and optimistic. Seeing how far the boys and I have come has made me realize I no longer live so much in fear.”
Alex: “My emotions were down. I didn’t know what to think at such a young age that something like this could happen to me. I didn’t know what to do. I was scared for my life, that I wouldn’t be able to dance again, the one thing that took me away from doing bad things. Over the past seven years, it has gotten slowly worse, but every day my knowledge of this condition has increased immensely. Through it all, I have worked on bettering myself as a person and as an individual.”
Adrien: “The diagnosis impacted me greatly. My mental health was not in the best state, and I did end up seeking therapy related to it. I can proudly say that it has given me a new outlook on life that I didn’t have before. I am in a much better place now. At first, I experienced a wide range of emotions like confusion, fear and anger. I didn’t understand what was going on because I was so young. As I got older, things became a lot easier to understand. I have also been in college for a few years now, taking some medical classes, and they have helped me to understand more about the structure and function of the heart. If anything, it has increased my interest in the medical field. I feel like now I am in a much better position to help others who may be going through similar issues.”
How did receiving a diagnosis of Long QT Syndrome change your lives?
Palmire: “Together, the boys and I can no longer take any over-the-counter medications for common colds, and we can’t take just any antibiotics when we have an infection. Also, like with schools and Alex’s dance academy, we must constantly educate people of our condition everywhere we go.
“The boys each wear a medical alert bracelet, and we take our beta blocker medication every day. Also, we must stay hydrated - it’s not an option.
“Of course, we cannot miss any of our doctor appointments, and I have to get my defibrillator interrogated every three months. And, when we go on vacation, we always take out travel insurance.”
Alexander: “My life has changed indefinitely because I have to take extra precautions in everything I do. My life has never been the same, even after seven years have passed. I monitor my heart rate with every activity I do, and constantly stay hydrated. It’s definitely a huge change, but I learned to grow into this new normalcy.”
Adrien: “The diagnosis has changed my life completely. It hasn’t been - and never will be - the same. I have multiple doctors that I have to go to frequently, and I have to be careful which medications I take. I have to monitor my heart rate when playing sports, and I have medication I am required to take every morning to help with the condition.”
Since your diagnoses in 2013, how have you changed the management of your condition over the past seven years?
Alexander: “Every day I strive to drink half of my body weight in fluid ounces to ensure I'm always hydrated. I take a beta blocker every morning which controls my heart rate. I also have two portable defibrillators I take with me everywhere I go. I see both an electrophysiologist and a cardiologist once a year.”
Palmire: “I walk daily, although I’m afraid to get on a treadmill. I am not as physically active as I used to be.”
Adrien: “Over the years, I have gotten into exercising a lot more and making sure I am eating healthy and paying attention to what I am putting in my body. I have learned that I have to keep my body at the top of its game so I can stay my healthiest. That is all that I really can do.”
Alexander, you’ve become renowned as a dancer. When did you develop your passion for dance, and how did being diagnosed with LQTS at age ten affect you, at the time, as you thought about your dancing dreams?
Alexander: “I developed my passion for dance when I was three years old, but ever since I was diagnosed it changed every opportunity for me. It was hard to do certain things, like dance for long hours and have enough stamina, and for a brief period I thought I couldn’t do this anymore.
“However, I didn’t want this condition to stop me from being happy and finding my escape. I took it as a boost to create a path for myself to not only help others but create an outlet for awareness for people just like me.”
What messages would you like to convey to others newly diagnosed with LQTS, particularly young children?
Adrien: “It is tough. It’s not an easy road to walk down, but it can be done. It is possible to manage it and still live your life. You will just have to be smarter about the choices you make.“
Palmire: ”Don’t allow fear to take over. There are medications and devices out there to help you when it gets to that point. Don't give up on any of your dreams; things do get better.”
Alexander: “Keep living life. Even though you have to make many changes, you have one life to live and make the best of what you have. Don’t take this as a negative, take this as a step forward in your life.”
