SPRINGFIELD, MA (WGGB/WSHM) -- October is known as Breast Cancer Awareness Month, but it's also a month dedicated to raising awareness about Rett syndrome -- a rare disease that strikes 1 in 10,000 women.
“I think bringing awareness and letting people know that just because she doesn’t speak like you and I would there are other ways she speaks, with her body and devices, and I’ve always said she’s my teacher and put myself in her shoes,” Maggie Wurm said.
Wurm is a Wilbraham mother whose 19-year-old daughter was diagnosed with Rett Syndrome almost 15 years ago.
She wanted to share her family's experience with Western Mass News so others could raise awareness about the neurological disorder.
“When Madasyn was younger, we felt like we missed out on a lot of the simple things in life like going to the movies, going to the birthday party,” she said. “Sometimes she was in her screaming mode, or she couldn’t last or often we weren’t invited, we felt excluded often.”
Wurm said her daughter going through developmental regression affects every aspect of life.
“Watching her suffer through that is heart-wrenching, and knowing she knows her body isn’t working the way she wants it too and watching typical others and wanting to be a part of that is really hard to watch,” she said.
And the Wurm family is not alone. In Hampden County alone, there are eight or nine girls known to be living with this disorder, and over 200 families impacted in Massachusetts.
But the Rett Syndrome Association of Massachusetts -- or RSAM -- is an organization that helps bring this community together
Wurm is the co-president of the group.
“It’s really important to feel connected to people that get it and lived it,” she said. “If I didn’t have those parents to ask those questions too, I don’t think Madasyn would be as strong as she is today or myself.” Madasyn’s doctor, Dr. Lieberman, who specializes in Rett Syndrome at Boston Children’s Hospital, said while the disorder is rare, there are treatments to help patients with their daily life skills.
“So right now, we offer systematic treatments for all of their challenges like physical therapy, occupational therapy and speech therapy to help promote their development,” he said.
“We always say if Madasyn can do it, we can do it,” Wurm said. “And want to help her have the best quality of life, then we have to do the same and that is what we live by on a day to day basis.”
Saturday, October 24, Blue Sky Day is virtually celebrating 10 years with a world family celebration. Families that are part of RSAM will be hosting and participating in this last event for Rett Syndrome Awareness Month hoping to educate and also recognize the strength and accomplishments of these kids and families.
For more information on the organization, click here.