Living With Rett Syndrome: Stoughton Mom Shares Her Son's Story

STOUGHTON, MA — When Aidan Freeman was born, everything seemed normal. It looked like Stoughton resident Tracy Freeman gave birth to a perfectly healthy baby boy at 7 pounds, 13 ounces.

Freeman said there wasn't even a blip of morning sickness, and every ultrasound and anatomy scan looked normal. But just a few hours later, everything changed. Aidan Freeman started coughing, stopped breathing and turned blue.

Her son was born with Rett Syndrome, 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 breathe without assistance. Rett Syndrome can also cause seizures. And with October being Rett Syndrome Awareness Month, Tracy Freeman said she's sharing her son's story.

"I would like to say this was the most frightening experience of our lives, but unfortunately it was just one too many to count that would occur with a frightening frequency throughout his life," Tracy Freeman said.

Rett Syndrome normally affects girls; male cases are much rarer, but more deadly because of how the disease affects boys' chromosomes. There's no known cure, and most boys diagnosed with the disease don't survive past their first year of life.

The scary part is Aidan Freeman 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 Tracy Freeman and her husband Michael their son probably wasn't going to survive.

But seven years later, Aidan is still here and fighting.

And despite having these grim conversations with doctors over-and-over, Freeman said her son is a happy kid with a good attitude.

Aidan Freeman 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.

He might be non-verbal, but 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 lets 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.

Living with Rett Syndrome During COVID-19

Amid the coronavirus pandemic, the Freemans have had to live with more fear because of the way Rett Syndrome attacks the immune system, especially for boys.

But since the beginning of the pandemic, Tracy Freeman said Aidan has fallen ill several times, and he had to have a pacemaker placed in due to heart complications. Aidan Freeman never tested positive for coronavirus. Tracy Freeman said he's "been tested more than anybody," but the pandemic created another thing for the Freeman's to worry about with Aidan's immune system.

"One might wonder, how does he get so sick?" Freeman said. We were following the rules. We did not go out, no one came in, everything was sanitized. How does this happen? This is Rett Syndrome for many males, who have compromised immune systems."

More on Rett Syndrome Awareness Month.

The Rett Syndrome Association of Massachusetts is working to increase awareness, celebrate those living with the disease, create enjoyable events for families and raise money for research.

Because of the coronavirus pandemic, most of this year's events are virtual. This year's events can be found at the Rett Syndrome Association of Massachusetts' website.

"We are asking people to read about Rett Syndrome, become aware and share their knowledge of the subject, Freeman said. "Awareness brings hope, and especially now during this pandemic, everyone deserves some hope."