Stoughton Family Runs Boston Marathon For Son With Rett Syndrome

STOUGHTON, MA — For local residents Tracy Freeman and her husband Michael, running the Boston Marathon is about more than testing their endurance or supporting a good cause — it's personal. The Freemans are running to raise money for finding a cure for Rett Syndrome, a rare genetic disease their son Aidan personally struggles with.

Rett syndrome is a debilitating disease, which causes people to lose bone density, leading to loss of motor skills, speech, and in some cases loss of the ability to eat and breath without assistance. In some cases, Rett Syndrome can cause seizures. There's no known cure.

Aidan cannot eat without a feeding tube; he uses a tracheotomy to help him breath and has braces on his hips and legs. He cannot talk or walk and is in a wheelchair.

The syndrome normally affects girls; male cases are much rarer, but more deadly because of how the disease affects male chromosomes. Most boys diagnosed with Rett syndrome don't survive past their first year of life. Baseline studies to discover a cure have only begun.

Six year's later, Aidan is still here and fighting. Aidan wasn't diagnosed until he was 2-and-a-half, as doctors didn't know why he was so ill, and many didn't see Rett Syndrome as a possibility for a boy. Doctors told the Freemans he probably wasn't going to survive.

"I cannot tell you how many times I’ve been told he wouldn’t make it through the night," Tracy Freeman said.

Despite having these grim conversations with doctors over-and-over, Freeman said her son is a happy kid with a good attitude. He might be non-verbal he still can tell his family so much just by the look on his face, Freeman said.

"With all that he’s been through, he’s always laughing and smiling...," said Freeman. "He can communicate with his eyes. He let’s you know what he needs. He loves to be picked up and dance around the room."

Aidan also loves playing with his siblings, who Freeman says are beyond patient and loving with him.

"His brother and sister are amazing with him. It’s all they've ever know," Freeman said.

The Freemans have also found comfort and been encouraged to keep fighting when they found 50 other boys on social media living with Retts Syndrome. The couple got involved with Rett Syndrome Association, and both will be running their second Boston Marathons to try to raise money for a cure.

This year though will be the first time the Freemans get to run together. Tracy Freeman ran in 2017, while her husband ran last year. Because of the help of their other two children and Tracy Freeman's mother, the couple were able to train, and now run together.

"We're not runners," Tracy Freeman said. " I decided (to run) when I saw a post that they (Rett Syndrome Association) were looking for runners....I did a lot of training alone the first time, a lot on the treadmill since Aidan was in the hospital a lot."

With both Freemans running and the support of their family, they've been able to raise over $6,000 in just two months for the Rett Syndrome Association. To see the campaign for Aidan, check out the Freeman's Crowdrise page here.