For the Farkas family, love and fear live side by side
In June 2020, Carina and Luke Farkas were elated to welcome their daughter Callaway into their lives. Despite the overwhelming feelings of fear and uncertainty that the COVID-19 pandemic brought on, Callaway’s birth brought joy and hope to the couple and their extended family. But within hours of arriving home from the birthing center, their excitement turned to alarm – Callaway’s lethargy and rapid breathing were clear signs that something was wrong with her health.
“We didn’t appreciate exactly how close to catastrophe we were at the time"
After several days of examination at Vanderbilt University Medical Center, Callaway was finally diagnosed with methylmalonic acidemia (MMA) – a genetic disorder that Carina and Luke had never even heard of, let alone suspected. They would soon learn how fortunate they were to have a care team that specialized in MMA given its rarity and the complexity of managing the disease.
At a time when most parents would be doting over their newborn, Carina and Luke were poring over journal articles and research papers to gain a better understanding of MMA. Before finding educational resources designed for families and caregivers, the Farkas family struggled to decipher medical jargon related to the disease. The couple felt especially overwhelmed when they discovered MMA is progressive and that there are no approved treatment options available. To help prevent future metabolic crises, Carina and Luke needed to limit Callaway’s protein intake and carefully control her diet. Regardless of their best efforts, they knew they would need to learn to live with the constant fear that one metabolic crisis could set back any progress they made.
“We were scared that Callaway would die but also scared that she would live and have a life full of pain and suffering. We were afraid that her crisis as a newborn caused brain damage that might lead to cognitive challenges later in life. There was so much to worry about.”
The first 14 months of Callaway’s life were marked by 8 hospital stays. Vomiting, global brain swelling, difficulty breathing, and a myriad of other complications led her care team to recommend a liver transplant. As difficult as the decision was to make, Carina and Luke understood it was their best bet at the time to help improve Callaway’s quality of life. While they remain hopeful that one day families will have more diverse options to help manage MMA, they are grateful that Callaway had the opportunity to receive a liver transplant as it has played a critical role in supporting her health.
Looking to the future
Although Carina and Luke call Callaway’s transplant “life-changing,” they know it did not mark the end of her health challenges. They monitor the speed of her feedings to help prevent vomiting and must always be prepared to manage the sudden onset of other significant symptoms. Carina kisses her daughter’s forehead dozens of times a day, both because she loves her and because she needs to check her temperature. The family has adopted a lifestyle centered on hypervigilance to protect their immunocompromised child. No shoes are permitted inside their house and Callaway is not allowed to touch the mail.
Considering the many challenges Callaway has faced throughout her short life, she is resilient and filled with joy. She is starting to walk, loves to bark at dogs, and enjoys bubble baths. Unlike most parents, Carina is grateful to clean up after her daughter – even when she opens all the kitchen cabinets and removes the objects inside. Any silly mischief that a “normal” toddler might indulge in is welcome in the Farkas household. Carina hopes that as Callaway grows up, she will be able to see beyond the trauma she endured as a baby and consider MMA a small part of her life story.
“We have learned to take one step at a time. It’s all we can do. The love we have for our child is amazing and makes all of the challenges worth it. We’re so glad that she is here with us.”
Carina and Luke wish for all families facing MMA to know that the whirlwind of emotions they experience after receiving a difficult diagnosis are valid and part of the journey. They have seen firsthand how important it is to find a space to feel anger, guilt, and happiness without judgement. Despite the uncertainty that accompanies life with MMA, Carina attests that the fierce and unconditional love she has for her daughter is a gift she cherishes every day.
“You have permission to hate your ‘new’ life and love your child fully at the same time. Let yourself feel everything.”
Callaway and her parents, Carina and Luke, enjoying an autumn day at home.