Gavin Lawrey is only 6 years old, but he lives with so much pain that on some days, his parents and sister can’t hug him or touch him. After suffering since he was 18 months old with perplexing symptoms, experts in Atlanta in 2012 diagnosed Gavin with an incurable mitochondrial disease that saps all of his energy and causes seizures and several other issues.
His disease is also wreaking havoc on his respiratory system, which will sometimes shut down. On the days that he is able to attend school, it’s only for a half day escorted with his mother, Brandi, and his seizure-detecting service dog, Hershey.
“We have good days and bad days,” says Brandi. “We have two Gavins. You don’t know which one you’ll get, but when he’s having a good day, we soak every second up.”
Gavin has been through countless meilica1 investigations and treatments and has landed in the emergency room more times than Brandi can count. The disease has strained the family’s finances; their house went into foreclosure when Jeff and Brandi made the decision to pay for their son’s care rather than make mortgage payments. After one arduous visit to the emergency room, the Lawreys consulted with his doctor, who referred them to Hope Kids Care to provide palliative care and therapies that can help Gavin live more comfortably.
Through some of their darkest days, expressive arts have buoyed Gavin and his 9-year-old sister, Makenzie, in amazing and unexpected ways. Because he cannot play sports or pursue other hobbies as boys his own age, Brandi discovered that he was interested in taking pictures. She bought him a camera and sells his photos on Etsy.com.
Visits from Miss Kim, Hope’s music therapist, brighten Gavin’s world. “He knows he has to save his energy for Miss Kim. The days he knows he’s going to have music therapy, he wakes up smiling,” Brandi says. “She brings out this energy whenever she’s around.”
His sister Makenzie turned her fear and bewilderment about her brother’s disease into a book that she wrote by herself called Mighty Mito Superhero with hopes of spreading awareness and raising money to find a cure for mito disorders. The book was illustrated, pro bono, by a local cartoonist who sat with Gavin for more than four hours as Gavin helped him craft the main character, Mito Action G, to Gavin’s perfect liking. His sidekick, Hershey the Seizure Dog, wears a jetpack, and together they defeat the evil Mito.
Miss Kim and Gavin penned a Mito Action G song that she recorded for him, which thrills him. He has difficulty remembering the alphabet, but “he knows almost every word to the song,” Brandi says. “He loves music therapy. He forgets he’s sick when he’s here.”
Makenzie also participates in music and art therapy sessions. “It’s medical related, but they’re not poking and prodding him. They’re not hurting him,” Brandi says. “She gets to see him doing something he enjoys.”