Stoughton Family Running Boston Marathon For Their Son

STOUGHTON, MA — Some people run the Boston Marathon as a personal achievement, while others run for a cause. But for Tracy Freeman, her husband Michael and her brother Richard Kerr, the cause hits much closer to home. The Freemans will run for their son Aidan, who has battled Rett Syndrome for the last seven years.

Rett syndrome is a rare genetic 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.

For Aidan, the disease means he cannot eat without a feeding tube; he uses a tracheotomy to help him breath and has braces on his hips and legs. Aidan 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.

But seven years 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 told Patch. "He's my little trooper."

Despite having these grim conversations with doctors over-and-over, Tracy Freeman said her son is a happy kid that can tell his family so much just by the look on his face. Despite being non-verbal, Tracy Freeman said Aidan can express so much to his family through facial expressions and laughter.

[When being pushed in his wheelchair,] "He likes to go fast," Tracy Freeman said. "He likes to speed. Sometimes if it's nice out, we run up the street with the wheelchair. He'll laugh and giggle. He also loves to dance; he loves music of all kinds."

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

"If you ever want to know how to treat a kid with special needs, just look to the siblings," Tracy Freeman said. We are really proud of who they are. They're great little people. "They know exaclty what he needs. It's all they ever knew so they just treat him as who he is."

The Freemans are running the marathon for the third time and second time together as part of the Rett Syndrome Association's team to try and raise money for a cure. And this time, the team has grown to eight people, including Aidan's uncle Kerr, of Easton.

Tracy Freeman said the experience last year was great, especially because her family raised a lot of money after the race.

"The more awareness, the more it helps," she told Patch. "Whether it's runners you meet along the way, a lot of people haven't heard of it (Retts Syndrome)."

So far, the Freemans have raised more than $10,500 for the Retts Syndrome Association. To donate, check out the association's GoFundMe page.