Meet Mackenna: 2018 Speak Now for Kids Family Advocacy Day Champion
Mackenna is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Mackenna will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.
Mackenna is a pioneer. She was born with her lung and liver fused together, a condition reported only four other times in medical history. Mackenna is the only child known to have survived. But Mackenna is a remarkable young lady for many reasons beyond her health condition. She is a straight A student, an accomplished pianist and a budding rock climber.
Mackenna was first treated at UCLA Mattel Children's Hospital when she was 4 months old. She came to the children’s hospital for the highly specialized treatment she needed that could not be provided at a typical hospital. She was treated for pulmonary hypertension, which was complicated by her other medical conditions.
In the past five years, she has been hospitalized in the pediatric intensive care unit twice yearly, and her condition is managed by medication. While Mackenna’s medical condition was expected to get significantly worse over time, her health has remained remarkably stable over the years. When new medical complexities arise, her doctors have developed new treatment ideas to keep her healthy.
While the medical care at UCLA Mattel Children’s has been exceptional, the welcoming environment they created for Mackenna was just as important. Her mother, Amanda, recalled that, “because of the emotionally supportive environment at UCLA Mattel, when she is sick, she not only isn't afraid to go to the hospital, she wants to be there because it feels like a safe environment.”
At first, Mackenna’s lung/liver fusion seemed insurmountable. But thanks to creative and passionate physicians, along with Mackenna’s unrelenting determination, she persevered. Mackenna is a happy, smart and funny 11-year-old with a passion for the outdoors, traveling and dogs. Now she is also incredibly excited to take on her new role as an advocate in Congress for children’s health.
Join us in welcoming Mackenna to 2018 Family Advocacy Day.