Evangeline “Lina” Emerson was born in 2015 to doting parents, Jennifer and Evan. She was a healthy newborn with sparkling eyes and precious features. Her parents had no history of chronic illness. “I had perfect immunity growing up,” Jennifer says. “I remember one time I stayed home from school because I was actually sick. Otherwise, I was healthy. So having kids with serious illnesses wasn’t something I even thought about.” Little did she know, her life was about to change in ways she could never have imagined.
When Lina was about seven months old, she began vomiting and showing signs of feeding difficulties. Her parents initially thought it was related to food, a tongue tie, or a mild allergy. “She was always small,” Jennifer recalls. “We thought maybe it was GERD, maybe she’d grow out of it. But by eleven months, she got very sick. She lost a pound in a week because of all the vomiting.”
The hospital stay that followed was harrowing. Lina was dehydrated and weak. Jennifer realized the severity of her daughter’s condition. “We ended up in the hospital for eleven days. Had we not gone, I don’t think she would have survived.” That stay led to an NG tube, which traumatized the whole family, followed by a G tube. “[The G tube] was life-changing. Lina started regaining skills she had lost. She was moving better, communicating more, and finally thriving again.”
In December 2016, while pregnant with their second child, the Emersons received Lina’s earth-shattering diagnosis. Jennifer remembers the moment vividly. “We were driving to see Christmas lights… and we were getting the worst news of our lives.” They were two hours from home. Lina’s neurologist was out of the country, so an unfamiliar resident delivered the diagnosis over the phone: Leigh syndrome. “I immediately went online… There was no treatment, and children often died before age three.”
Based on what she read online, Jennifer deduced her unborn baby would have Leigh syndrome, too. She was only in her first trimester, did not yet know the sex of her baby, and had not announced her pregnancy.
Fast forward to two weeks after having their beautiful baby boy, Malachi. The Emersons received another devastating blow. As Jennifer suspected, Malachi was diagnosed with Leigh syndrome, too. The heartbreak was very real, but Jennifer also found clarity. “Knowing [they] had it, even though it was devastating, allowed us to make choices. We could focus on the best care and love for [them], without putting [them] through treatments that might not help.”
Their daughter Lina’s personality shone through every challenge. She was vibrant and tenacious. Even during hospital stays, she found joy in small things. “She was obsessed with her little doll comb. She would comb everyone’s hair, even the doctors and nurses,” Jennifer recalls with a smile.
The family’s Make-A-Wish experience gave Lina and Malachi a backyard full of wonder. This family oasis includes wheelchair accessible swings, a garden that attracts birds and butterflies, and a waterfall that could be heard even when vision was limited. “She loved being outside,” Jennifer says. Even though Lina had limited mobility, she could feel the garden, see the colors, and hear the water. It became a space where their family could connect and celebrate life.
For Jennifer and Evan, the end of Lina’s eight-year journey was both anticipated and gut-wrenchingly sudden. Yet even in her deepest grief, Jennifer finds gratitude. She is grateful they spent their final weekend together doing Lina’s favorite things. She is grateful they were with Lina as she took her last breaths, holding her close, telling her how deeply she is loved, and how she changed their lives forever.
Notably, Jennifer is grateful they were surrounded by doctors and nurses who knew and loved Lina. She emphasizes that Lina’s care went beyond medicine. Jennifer learned to “speak medicine” in order to build relationships with every doctor, nurse, and specialist. She ensured they each knew Lina not just as a patient, but as a little girl, and as Jennifer’s daughter. “Her funeral wasn’t [attended by] teachers or ballet instructors. It was the doctors and nurses who cared for her,” Jennifer says.
Lina brought joy to every person who crossed her path. She was known for her sassy spirit and her fierce determination. Although she did not use spoken words, Lina tenaciously found ways to communicate her needs. She loved the water, the feeling of gentle hands in her hair, long cuddles with her parents, time outside in her favorite swing, and kisses from her puppy, Penny. Above all, she treasured every moment with her baby brother, Malachi.
Jennifer carries Lina’s memory forward each day. While she once dreamed of traveling, catching frogs, and exploring nature with her children, she now talks to Lina from their garden, sharing little discoveries of the world with her.
Lina was determined to experience life, no matter its limitations. She leaves behind a legacy of joy, determination, and vibrancy for those who loved her. Jennifer hopes that sharing her daughter’s journey will help other families remember one thing: you are never alone.
