Stoughton Mom Runs 2022 Boston Marathon For Rett Syndrome

STOUGHTON, MA — After losing her son to a rare genetic disease called Rett Syndrome, Tracy Freeman is running the Boston Marathon in his honor to help raise awareness of the devasting disease.

Aidan Freeman was born in 2013 and was the only boy in Massachusetts to have Rett Syndrome, a neurological disorder that normally affects girls. There is no known cure, and most boys diagnosed with the disease don't survive past the first year of their lives.

Aidan was a strong and happy boy child who sadly passed away on March 7, 2021, at the age of 7 after a courageous battle with Rett Syndrome.

"I lost my heart. I simply would have stayed in bed for the past ten months, except for Aidan's two siblings who he adored," Tracy said.

Tracy, who along with her husband has run the Boston Marathon before, will be running in support of Rett Angels, an organization out of Massachusetts that dedicates itself to community outreach for families affected by the disease.

"Even though my son has passed, I'm still running for the cause," Tracy said.

Due to the extreme nature of Rett Syndrome, male cases are much rarer than females because of how the disease affects the X chromosome. Rett Syndrome causes people to lose bone density, leading to loss of motor skills, speech, and in some cases loss of the ability to eat and breathe without assistance. Rett Syndrome can also cause seizures.

"Aidan carried within him a light and wisdom beyond his years along with a million smiles, love and laughter," Tracy said. "His life brought along many medical complexities and he fought with a stamina that seemed unimaginable to everyone around him, and he met those complexities with light, laughter, kindness, and a wicked sense of humor."

This year, Tracy is joined in running the Boston Marathon by family friend Maurice Lowman, of Providence, Rhode Island. Lowman ran last October's Boston Marathon and raised more than $14,000 for the Rett Syndrome Association of Massachusetts, while wearing a blazer and dress pants, with Aidan's picture on his back to draw more attention to the cause.

"It was an absolute honor to wear his picture," Lowman said. "I loved the fact it generated a little bit of a buzz. People stopped and said, 'Hey, look at the guy in the suit. I wonder who that little boy is.'"

Freeman said this will be the first year the National Rett Syndrome Conference incorporates boys into their presentation. The conference is set for April 27-30 in Nashville, Tennessee.

"I am running this year in honor of my beautiful Aidan Michael. I am running for Ava and Julianna. I am running to raise funds and awareness for Rett Syndrome, so families with Rett will have support and hope," Tracy said.

Those who wish to donate to the Rett Syndrome Association of Massachusetts can do so on Tracy's fundraising page here.

Related

• Living With Rett Syndrome: Stoughton Mom Shares Her Son's Story
• E. Providence's Boston Marathon Finisher Runs For Rett Syndrome