Meet Kayla: 2018 Family Advocacy Day Champion
Kayla is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Kayla will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.
Kayla is not only a happy and social young woman; she is a Boston Marathon participant. She and her mom are the first mother-daughter wheelchair team to finish the marathon in its 117-year history.
Additionally, she has been an advocate for promoting inclusion in her community, and has a knack for making anyone smile. Kayla’s incredible achievements do not stop there — she has always done the unexpected.
Throughout her life, Kayla has faced a number of serious health challenges. At birth, she was diagnosed with mitochondrial encephalomyopathy, which means her body cannot process food into energy. This past year, she was also diagnosed with a TRIO genetic variation — she is the 20th person in the entire world to be identified with this gene variation.
Kayla was first treated at Boston Children’s Hospital when she needed open-heart surgery at just 4 months of age. When she was 5, Kayla spent nearly six months in Boston Children’s with pneumonia and serious infections due to a compromised immune system. But Kayla is a fighter. She has persevered through medical issues time and time again, and at the age of 23, she has shattered the 10-year life expectancy she was originally given.
But Kayla was not in this fight alone. Kristine, Kayla’s mother, shares, “Kayla is here today because of the world class care she received at Boston Children's Hospital.” At Boston Children’s, Kayla has formed a bond with her cardiologist, Dr. Alexander, whom she has known since she was just 4 months old. Kristine adds, “They love each other. They have a special connection and Kayla can’t wait to hug him.”
Kayla has many interests — she loves shopping, shoes, boys, and her dog, Rex. Kristine points out that “while Kayla may be non-verbal, she will always tell you what’s on her mind.”
Join us in welcoming Kayla to 2018 Family Advocacy Day!