Sarah and Scott Stuart are like just about any other parents when it comes to their child heading to school. They know apprehension in the morning and not wanting to leave the vehicle they are in to get to classes is the sign of a problem.

 

They, like all others, hope for the opposite. This year, they got just that with their 8-year-old daughter Ophelia “Opie” Stuart.

 

“My dad takes her in the morning,” said mom Sarah Teresa Stuart of the morning school runs. “She runs to get there. In the morning I can’t hold her long enough to give her a hug. That excitement, I can’t explain what it means to us.”

 

For those thinking mom may be a little over the top on the excitement, you could not be more off on the observation. Opie, with the beautiful smile, has Rett Syndrome. For those that do not know, it is a life changing diagnosis.

 

Rett syndrome is a rare genetic neurological and developmental disorder that affects the way the brain develops. This disorder causes a progressive loss of motor skills and language. Rett syndrome primarily affects females – and Ophelia Stuart is one of those females.

 

Eventually, we will talk about Opie’s latest heartwarming adventure in school as well as how to help the Stuart family and others who are staring down Rett Syndrome. Before going to where she is at, we need to take a look at where Opie and her family have been.

 

Ophelia was normal at birth. In fact, she was past her first birthday before Sarah and Scott began to notice something was not right.

 

“Around 15 months, we started seeing her lose a few skills she had acquired so we looked into it,” said Sarah. “She was diagnosed with Autism, but we were unable to do the genetic testing to confirm it due to the cost because you’re trying to find a needle in a haystack.”

 

Eventually, at age 4, the family was able to do the genetic testing. As it turned out, it was not autism. Instead, the genetic mutation found resulted in the Rett Syndrome diagnosis.

 

“We knew they were going to find something, maybe it was autism, but she essentially stopped developing and acquiring skills around 15 months,” said Sarah. “She is now who she was then.”

 

That did not mean that Opie would not be involved in things. The parents already had her in pre-school at age 3 though an early intervention program by the state. She was in the program and then into a WVU-based educational system for several years.

 

“She went two days a week for five years. I know for us and for those that helped there were a lot of difficult days,” said Sarah. “It wasn’t always Ophelia at her best.”

 

The other three days were spent in therapy. She went to a program through WVU Children's Medicine before aging out of it. Last year, Opie was in an Applied Behavioral Analysis (ABA) first grade class through WVU. It was six hours and more clinical than a regular school setting.

 

When the Stuart family recently made the move from Morgantown to Bridgeport, they were hesitant to increase her time in school. Not because she hated it – she had plenty of good days – but because they knew at times it was difficult on Opie and difficult on those who were responsible for her at school, in this case Johnson Elementary.

 

“This was more than just a school change; it was a change of routine. What makes it hard is she can’t talk or tell you about her day to us or to the teachers that will be working with her,” Sarah said. “We were putting her in new hands and knew we had to prepare them for the uniqueness of our special needs kiddo.

 

“You’re always protective, but when communication is so difficult with no spoken words you worry about isolation in school,” she continued. “We went in to talk to let them know you have to be engaged with her and, as I’ve said, it can be difficult. She talks with the look in her eyes and if she doesn’t get her way she will scream and yell. Most understand why we were hesitant.”

 

Even with the concerns, Scott (a Bridgeport native and 2004 BHS graduate) and Sarah met with the school system and the staff at Johnson Elementary. They were quickly put at ease.

 

“They were very open and eager to all the details that come with Ophelia and Rett Syndrome,” said Sarah. “That was the start to where we are today. I can tell you sending her to Johnson full time has been one of the best decisions we’ve made over the last four years.

 

“It’s been life-changing for her and our family being at Johnson. They’ve been fantastic. I think it goes to show the community presence and involvement in being successful as a whole together,” Sarah said. “We’re involved with several Rett Syndrome support groups and what we’re experiencing at Johnson is something few families with their kids’ who are dealing with the same thing experience. We know we’re lucky and blessed with our situation.”

 

Sarah said at every stop there has been quality people who have worked with her daughter. This, though, is next level.

 

“It’s hard to put my finger on. It’s not that what she was getting before inadequate. I think it’s their ability to see a person and a little girl who is eight just like the others who just want to have fun and be heard and cared for,” said Sarah. “I don’t think you can teach what they bring to the table. I think it’s a unique compassion. It’s why they do the work they do.

 

“They’re willing to work through the difficult time. It’s not easy,” she continued. “She’s a hard gal to care for. It takes a lot.”

 

The better news is it is not just the teachers who are looking after Ophelia. The students are aware of this special child in their midst and have made her one of their own.

 

“I know one class can hear her coming down the hallway and they start clapping and she just lights up because even with Rett Syndrome I think she knows she’s loved,” said Sarah. “That’s all we want for her is love.

 

“Those kids let her be around her and are excited to be around her and they accept her on her level and make it fun,” Sarah continued. “I don’t think those students know what they’re giving her and providing her just by letting her be herself and being kind. We can’t give her, and the medical field can’t give to her, what those students and that school is giving to her.”

 

The benefits go beyond the days at school. Sarah said Opie is more engaged at home and that has helped with the always difficult task of communicating with their daughter.

 

“You know it’s working when she’s very happy to get up every morning and go to school,” Sarah said.

 

The family is already feeling comfortable about transitions into other schools in the Bridgeport system, which she can attend until the age of 21. They are comfortable knowing she is in a classroom setting for a large portion of the time geared for children with severe disabilities.

 

“The one thing we love is, when appropriate, she is integrated into the main classrooms for socialization,” said Sarah, who with Scott has another child Juliet who is 3. “That will continue as she moves up and I’ve heard wonderful things about the schools in Bridgeport how they support the kids and work as a team. I don’t have any reason to be alarmed.”

 

They also know the disease is progressive. They know there is no cure. And that is where you can help.

 

“We’re fundraising because it is palpable how close it is to being cured. I’ve seen similar diseases cured and seen kids who shouldn’t be alive putting dishes away,” said Sarah. “Our hope is one day she will get a college application and fill it out. That’s what we want.”

 

To help out, you can visit the “Hope for Opie” page on the internet. The family is raising funds for a Rett Syndrome Research Trust called RettGive. CLICK HERE to go to Opie’s page.

 

“They do a lot of fundraising that goes to research and development to find treatments and a cure for Rett Syndrome. It was started by a mother of a Rett Syndrome child who is in health care and who has a unique 20-year perspective on the syndrome,” Sarah said. “The money we raise is not for Ophelia specifically. Every penny goes to the Trust.”

 

And every smile, every moment created by our wonderful educators and equally wonderful classmates of Ophelia’s at Johnson goes straight to the heart of Sarah and Scott Stuart.

 

Editor's Note: All photos courtesy of the Stuart family.