A Baby's Unexpected Journey: Defying the Prognosis

When Courtney Lund was a college student at the University of California, Santa Barbara, she got a call from her parents saying her baby brother Gaiwin was dying. He had been diagnosed with a very rare disease: Aicardi-Goutières Syndrome. The doctors concluded that hospice care was the only option. The baby's days, they believed, were numbered. Gaiwin was just four months old.

"I rushed to Spanish class, but I couldn't listen. I stared into space, numb," recalls Courtney Lund in an article she wrote for The New York Times. "I remembered Gaiwin's birth last summer. He looked like the other babies in our family, a happy baby with thick blonde hair. Then, at six weeks old, his fever spiked and stayed high. No one knew why."

Only after several months did the parents receive the shocking diagnosis. Gaiwin's illness was causing brain damage. Soon, the doctors warned, he would lose all motor abilities, stop eating, and pass away.

After much internal struggle, Lund decided to leave college and return home. "I knew I couldn't live with myself otherwise." She went back to her hometown and spent every day with her siblings, including Gaiwin.

"Sometimes Gaiwin was still the handsome baby who smiled at me with innocent blue eyes. Then, suddenly, it was as if he disappeared and was replaced by someone else... His fever was joined by tremors and vomiting. He would scream uncontrollably, his face going gray, his eyes rolling in different directions. My mother called it: 'visits from the monster'..."

"There's no book to teach you how to love your dying little brother, but eventually, I learned. Instead of hiding from the monster's visits, when his body shook, when his lips turned blue — I would look at him and say: you are worth it."

Somehow, Gaiwin didn't die. On his first birthday, the doctors announced his hospice period was over. Incredibly, this sick baby survived hospice!

He's not healthy, of course. "Instead of waiting for the baby to die, we learned to love and live with a very limited child," says Lund.

Gaiwin is now nine years old. He is completely paralyzed. He cannot speak, walk, or eat solids, "but he survives," his sister says. "He is a source of great joy."

"That doesn't mean life is easy — for him or for the rest of the family," she adds.

Every morning one of Gaiwin's parents carries him downstairs and seats him in a special chair. Then he needs to be fed breakfast from liquid foods — a process that can take an hour. Each day he also needs several epilepsy medications. He undergoes many therapies, including physical and occupational therapy. "But his life also includes things like floating in the pool with a life vest, going to school, and even crossing a marathon finish line with my husband pushing his stroller," says Lund.

Instead of breaking the family apart, Lund says, now writing a book about Gaiwin, their sick brother brought them closer together. "We celebrate Gaiwin's small milestones: whether it’s running on his special treadmill or using eye-gaze communication technology or the fact he’s learned to nod his head to tell us he wants to play with his sister or go to the bathroom."

"We don't know what his future will look like," concludes Lund. "But then again, we don't know what anyone's future will be. The mystery of his life isn't different from the mystery of all our lives."