When Michael “Mick” Devlin was born in 1987, his parents were sure of two things: They loved him, and they would cherish every minute they had together because no one knew how many they had left.
Mick was born with ornithine transcarbamylase (OTC) deficiency, a genetic disorder that disrupts the liver’s ability to break down protein and eventually leads to a toxic build up of ammonia in the blood. It’s a very serious condition, and when Mick was born there weren’t many sustainable treatment options for OTC deficiency. Many children with the disease died.
Needless to say, when Mick’s parents Cathy and Michael held their newborn son and learned about his OTC deficiency, they were terrified. And while they didn’t know it at the time, their son would soon be one of the first children in New England to receive a successful liver transplant—a surgery that would eventually save his life, and the lives of thousands of children to follow.
Rachael Adler is not the kind of person who stands around waiting for life to happen. At 13, she’s a good student who participates in many school and community service events. And despite her young age, she’s been a key speaker at events held by both The New York Alliance for Donation (NYAD) and the Northeast Kidney Foundation.
But Rachael didn’t get to be the strong, active young person she is today without overcoming adversity first—and overcoming that adversity is playing a big role in helping shape the person she wants to become.
By Irene Sege
Kate Franklin was just three and a half years old in August 2000 when her mother Emily brought her to the Boston Children’s Hospital emergency room, because she was bruising easily and couldn’t seem to shake a strep throat. Loren Walensky, MD, PhD, had just started his fellowship in pediatric hematology/oncology the month before, and that night Kate Franklin became one of the first patients he diagnosed with cancer. When Walensky told Emily Franklin that her daughter had leukemia, the mother placed her hands on the doctor’s shoulders, and, in a moment that Walensky says he will never forget, she said, “I will see you at her wedding.”
By Kerry Sheeran, author of The Marathon, a novel based on the true, emotional journey of a mother and father forced to face their daughter’s life-threatening medical crisis.
Having held my daughter Emma’s hand through eight major surgeries, I consider myself well-versed in what it means to be a patient advocate. All parents are advocates for their children to a degree. From trying to feed them the right foods to connecting with their teachers, helping kids find their way in the world requires a lot of guidance and support from mom and dad.
But when your child has a medical crisis, advocacy takes on a whole new meaning. You become the “voice” of the sick child, speaking for them, through your own lips. Patient advocacy isn’t something that’s necessarily innate—it’s a skill that is developed over time. My husband and I learned this first-hand (with the help of a handful of Neonatal Intensive Care Unit (NICU) nurses at Boston Children’s Hospital.)