In our “Why I’m Running” series, Boston Marathon runners share what’s inspiring them to make the 26.2-mile trek from Hopkinton to Boston on April 16, 2018. Editor’s note: Due to the number of submissions already received, we are no longer accepting entries for this year’s race.
Name: Michael Freeman
Bib #: 26943
On Monday, April 16, I will be running the Boston Marathon in honor of my son Aidan and all others who struggle with Rett syndrome. Aidan is a remarkable 4-year-old boy who has beaten the odds. Aidan is one of only a handful of boys living with Rett syndrome. He spent the first year of his life fighting for his life. He was intubated through numerous battles with pneumonia, RSV, and unspecified respiratory decline. He fought as hard as he possibly could to stay with us, and he did it with a smile on his face and a twinkle in his eye. My wife Tracy and I have decided one way to fight for Aidan is to raise money for research, with the hope of someday reversing Rett.
Rett syndrome is a unique developmental disorder caused by mutations on the X chromosome on a gene called MECP2. A rare disease, the incidence of Rett syndrome is about 1 in 10,000. The course of Rett syndrome, including the age of onset and severity varies from child to child. As the syndrome progresses, most children lose purposeful use of their hands and the ability to speak. Other symptoms may include loss of motor skills, onset of breathing and cardiac irregularities, seizures, digestive problems, scoliosis, and tremors. Please support Team Rett in its efforts to fund research that may lead to a cure for Rett syndrome!
Editor’s note: Entries may have been lightly edited for clarity or grammar.