Therapy Services Help Young Girl Retain and Learn Skills To Live a Better Life

First time parents Michaela and Mark Matthews initially thought their baby girl, Addison, was developing normally. But as time passed, they felt her development was slowing and became worried. They sought medical expertise that included genetic testing. At the same time, they moved to a new community and Addison began receiving outpatient physical, occupational and speech therapy services at Cleveland Clinic Children’s Hospital for Rehabilitation Stow-Falls location.

Shortly after beginning therapy services, the genetic testing results came back. Addison has Rett syndrome, a rare neurodevelopmental (brain and nerve) disorder that almost exclusively affects females. Caused by a random gene mutation, about one in every 10,000 to 15,000 baby girls are born with Rett syndrome.

Cleveland Clinic physical therapist Regina Thompson, PT, DPT, PCS, was the first therapist to work with Addison at Stow-Falls Therapy Services. “In my 28 years of working as a physical therapist, I’ve only treated several girls with Rett syndrome,” says Thompson. “I was already working with Addison when her diagnosis was confirmed, so I was able to counsel her parents, explaining that while her symptoms may vary, we would continue with therapy to promote the highest level of independence and mobility for her.”

Children with Rett syndrome appear to develop typically, but between 6 and 18 months, may show a subtle slowing of development or regression of skills. A more rapid progression usually occurs between ages 1 to 4 years, when children may lose some language skills and use of their hands, exhibit muscle weakness and slowed growth. While Rett syndrome causes developmental challenges throughout childhood, as children get older, these challenges stop progressing, and sometimes, skills are partially regained.

Addison, who will turn four in September 2025, has been receiving therapy services from Cleveland Clinic for about a year and a half. “Rett syndrome affects everything that involves motor coordination – speech, swallowing, movement – simple things like reaching for a spoon or trying to sit up,” says Thompson.

While she is unable to walk or stand, Addison can speak 30 to 40 words. Other girls with Rett syndrome cannot speak words.

As the years go by, Addison has become more independent. She continues to make progress in her fine motor skills, speech, hand function and eating. (Photos Courtesy: Michaela and Mark Matthews)

“Addison was able to do some things better when she was two than she can today,” says Mr. Matthews. “But thanks to therapy, she’s making progress with fine motor skills like eating, lip closure and hand function. She’s better at assisted standing and is learning to take steps using a gait trainer.”

Therapists have helped the family obtain specialized equipment including a device that helps individuals with severe mobility impairment communicate via eye movement, and a modified ride-on car made to help young children with disabilities move around independently. Thompson is currently trying different gait trainers to determine which will work best for Addison in the long run, explaining that it’s crucial to identify the best device due to high costs and insurance coverage.

“We feel so fortunate to have been paired with amazing therapists at Cleveland Clinic who possess the knowledge, experience and skills to fully understand Addison’s condition,” says Mr. Matthews.

Addison currently attends therapy two days a week. She receives additional therapy at school, and her parents and little sister motivate her at home. To keep her motivated, everything therapy-related involves play.

“We can’t just tell a child to do 3 sets of 10 tasks because it’s good for them. They learn through play, and so do we. As we interact with them, we can identify their likes and preferences and that is important for effective therapy,” says Thompson.

Repetition is also important because it takes a long time to see if a new skill will develop. Thanks to her ongoing therapy sessions, Addison is making tremendous improvements in her ability to eat food, and to bear weight on her hands which helps her to lean and stand and communicate.

“Overall, Addison has gained a lot more independence. We’re thrilled with the progress she has made in her ability to express herself and do more things,” says Mr. Matthews.