Central Florida Dreamplex opens in Clermont

CLERMONT — Like any father, Ben Stalvey has big dreams for his baby girl, Gracie, a 4-year-old with one of the brightest smiles you’ll ever see. The dreams have nothing to do with a future career, fame or fortune.

They’re purer than that. 

Ben is dreaming for progress in the skills with which his daughter uses her Tobii, an eye-tracking machine that gives Gracie, who has Rett syndrome, a way to communicate. 

“My goal for her is that she can navigate those pages to say, ‘Daddy, I love you,’” Ben says.

It doesn’t stop there. On Gracie’s 16th birthday, Ben already plans to borrow a buddy’s truck to take her out for a spin.

“Oh, she’s gonna drive,” Ben says, with a grin. “I just won’t tell my buddy what we’re doing.”

And then, sometime after she turns 18, Ben wants to walk her down the aisle, symbolically recommitting her to God.

Now, with the opening of the new Central Florida Dreamplex, a therapy center for children and adults with disabilities, the Stalveys, who live in Winter Garden, have a central location at which to work toward all these goals. And more.

Ben, a member of the Dreamplex’s Dream Board, celebrated the center’s grand opening Jan. 10 in Clermont with Gracie, his wife, Tiffany, and their son, Braxton. The Dreamplex offers families with children with disabilities a central location at which to host their physical, occupational and speech therapy sessions. It’s also the brainchild of Amy Gomes, who has been Gracie’s physical therapist since she was 18 months old.

TOUGH STUFF

Gracie just wasn’t hitting her milestones. At 1 year old, she wasn’t crawling and sometimes would even fall over when she was sitting up. Her doctor also diagnosed her with hypotonia — low muscle tone — and ordered a few tests.

In the months following her birthday, doctors ordered more lab work, checked Gracie for hip and spine problems and placed tubes in her ears to help with her chronic ear infections.

“We were told that it could have been the ear infections that were the cause of the delays,” Tiffany wrote in her family blog. “I put all my hope in this surgery.”

But, when the 18-month mark came and went, and Gracie still wasn’t walking, doctors suspected something else was wrong — perhaps mitochondrial disease, which can cause many of the symptoms Gracie exhibited.

More tests followed — MRI, EEG, Oral-Pharyngeal Motility Study and more lab work. The results of those tests landed the Stalveys with a neurologist at Shands Hospital in Gainesville, where Gracie endured even more blood work and a 24-hour EEG.

The EEG results showed global brain dysfunction and sent the Stalveys on to meet with a geneticist and a pediatric ophthalmologist. They also scheduled a muscle biopsy in Atlanta, which revealed mitochondrial dysfunction, but doctors still didn’t think they had discovered the root of Gracie’s symptoms.

That revelation didn’t come until April 2013.

“I was on my way to drop off Gracie and Braxton when I got the email of the test results,” Tiffany wrote. “I thought for sure like all the other tests that it would say negative, but not this time. It was a long, detailed report that my daughter has Rett syndrome. At that moment, I’m not sure what even went through my mind. I even went to work like a normal day. Crazy … right? Maybe I was in shock, maybe disbelief — I’m not really sure. 

“I didn’t understand what Rett syndrome meant, but I do now,” she wrote. “I know that in this past year, she has lost the words that she once had. She has gradually lost control of her hands. She cannot feed herself. Some days, she cannot sit up, and some days, she is too clumsy to walk without hurting herself. She does not play with toys. She has seizures. She does not sleep well at night. 

“I could go on about all the things that this horrible disease has taken from my little girl,” Tiffany wrote. “We have had to navigate all the feelings that come with it. My heart constantly aches. I’ve had to make sure that I do not isolate myself from friends, family and other people and let it consume my life. It’s tough stuff.”

BLESSING

Tiffany’s blog post didn’t end there.

“It has been one year since I have been given a blessing — if I’m willing to take it as that,” she wrote. “If you decide to look at life through Gracie’s eyes, you see what life is really all about. Through so many struggles, she is still smiling. She makes you enjoy the little things. ... None of us is guaranteed another day, but we so often forget. With Rett syndrome, you can’t forget; you are reminded every day. It also reminds me how much I need to have faith and cling to God. I absolutely cannot do this without Him.”

With that security in faith, the Stalveys move forward. There are great days. There are horrible days. There was the day — Feb. 12, 2012, before Gracie’s diagnosis — that their home burned to the ground. The fire forced the Stalveys into a temporary living situation with family members, but it also helped Gracie take her first steps, thanks to the hard flooring in the home.

“You can definitely see God’s work in our lives,” Ben says. “That fire — that was getting us ready and prepared to lose the daughter we thought we had. So many people helped us through that situation, and that was before Gracie began regressing. Everything worked out exactly how it was supposed to — as frustrating as it is, sometimes.” 

That’s why Ben is ready to speak about his daughter — and Central Florida Dreamplex — to anyone who will listen. The Stalveys will be regular visitors of the facility for Gracie’s ballet and tae kwon do classes and other therapies.

“She loves music, and she loves to perform,” Tiffany says, smiling. “‘Shake it Off’ is one of her new favorites.”

Although there is no cure for Rett syndrome, the Stalveys hope keeping Gracie active and stimulated will help her retain as much of her fine- and gross-motor skills for as long as possible. And of course, they know to cherish every minute with their daughter.

“Gracie is such a blessing,” Tiffany wrote. “God gave us her to teach us so much. She brightens a room and brings people so much joy. … Find the sun through the rain and choose to laugh instead of cry. I don’t need a doctor to tell me how progressive it is. Our lives are progressive — you don’t know when it will be your last day. I try and focus on what Gracie can do and not what she can’t. God helps me to be strong and smile even when it’s hard.”

Contact Michael Eng at [email protected].

WHAT IS RETT SYNDROME?

Rett syndrome is a unique postnatal neurological disorder first recognized in infancy and seen almost always in girls. It has been most often misdiagnosed as autism, cerebral palsy or non-specific developmental delay.

Rett syndrome is caused by mutations on the X chromosome on a gene called MECP2. 

Rett syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function. These can include learning, speech, sensory sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing and digestion.

Symptoms appear after an early period of apparently normal or near-normal development until 6 to 18 months of life, when there is a slowing down or stagnation of skills. A period of regression then follows when the patient loses communication skills and purposeful use of the hands. Other problems may include seizures and disorganized breathing patterns while the patient is awake. In the early years, there may be a period of isolation or withdrawal when the patient is irritable and cries inconsolably. Over time, motor problems may increase, but in general, irritability lessens and eye contact and communication improve. Rett syndrome presents many challenges, but with love, therapy and assistance, those with the syndrome can benefit from school and community activities well into middle age and beyond.

Source: rettsyndrome.org

ABOUT THE DREAMPLEX

The Central Florida Dreamplex, which held its grand opening Jan. 10, is a center for fitness and recreation designed for families with special needs. The facility blends alternative therapy, adaptive sports and recreation activities, and group fitness classes for the entire family into one location. It is the brainchild of Amy Gomes, a pediatric physical therapist, and is under the umbrella of the Central Florida Pediatric Therapy Foundation.

Children who receive physical, occupational, speech, or early-development therapies can receive their treatments at the Dreamplex, which includes a 24-foot-long rock wall, an Exerbike gaming system, a GameCycle, and gymnastics equipment. The occupational therapy room features Nintendo Wii games, the Timocco interactive game set and a therapeutic listening program to focus on sensory integration.

The Central Florida Dreamplex also serves as a fitness center for the entire family. A selection of cardiovascular and strength-training equipment allows members to get in a workout while a family member receives therapy or participates in a group class.  

The facility’s class schedule includes ballet/dance, tae kwon do, music therapy, autism movement, adaptive yoga, tumbling and gymnastics.

The current location is temporary. Within the next several years, Gomes plans to open a 100,000-square-foot facility at Wellness Way in Clermont. That facility will have ice-skating rinks, sports courts and fields, a therapeutic pool and meeting rooms. For more, e-mail [email protected].

Source: cfdreamplex.com

CENTRAL FLORIDA DREAMPLEX

ADDRESS: 2400 S. U.S. 27, Suite B201, Clermont

HOURS: 8 a.m. to 9 p.m. Mondays through Fridays; 8 a.m. to 2 p.m. Saturdays

PHONE: (352) 404-4085

WEBSITE: cfldreamplex.com