Tags: Community & Outreach
The De Silvas, from left front, Cameron, 10, Taylor, 8, and Dylan, 3, along with their parents Nikki and James. SPECIAL. (click for larger version)
Dylan De Silva is on the road to recovery from tuberous sclerosis and epilepsy. (click for larger version)
March 06, 2012CUMMING, Ga. — When Dylan De Silva was just 17 months old, he began having daily seizures. The number of seizures went from once daily to more than five by the time he was 2 years old. Developmentally, that was affecting him.
"It was heart wrenching," said his mom, Nikki De Silva. "If I had to sum it up."
Dylan was diagnosed with tuberous sclerosis and epilepsy, and doctors recommended neurosurgery. TS is a rare genetic disorder that causes non-cancerous tumors to grow. The tumors go after the main vital organs. Dylan had three of these tumors in his brain.
"It's been a long road," Nikki said.
The De Silvas — father James and sisters Cameron, 10, and Taylor, 8, — took Dylan to Children's Healthcare of Atlanta at Scottish Rite for his neurosurgery in July 2011.
Dylan, now 3, was expected to be paralyzed for six months to a year after surgery, but doctors were amazed that he raised his arm immediately following the procedure.
For a school assignment about a hero, Cameron wrote about Dylan's surgeon, Dr. Robert Gross – saying he, "fixed my brother."
Dylan continued outpatient rehabilitation at Children's Healthcare of Forsyth, located at the Avenue Forsyth. The family even moved to Forsyth County from Cherokee in anticipation of a long recovery period and to be closer to Dylan's therapy sessions at Children's Healthcare of Forsyth, where he visited twice a week for physical, occupational and speech therapy. He had to relearn language skills, fine motor skills and gross motor skills.
"He was weak and had decreased balance," said Cheryl Miller, a physical therapist at Children's Healthcare of Forsyth at the Avenue. "By the time he left us, he was age appropriate."
The Forsyth CHoA facility location has also been a great convenience, said Nikki.
The facility, which opened June 2011, has had about 26,000 patient visits.
"In just eight months, Children's Healthcare of Atlanta Forsyth has surpassed many expectations," said Linda Cole, vice president of CHoA's ambulatory services. "Our volume has been much higher than projected."
With that volume comes longer wait times, Cole said.
"We are working very hard to resolve this situation by hiring another physician and more staff," Cole said.
Nikki, 33, said her son's therapy sessions at CHoA were "amazing."
"They want to see the children succeed," Nikki said.
Nikki's employers at Diamond Glass in Alpharetta have been understanding and supportive during these trying times, she said. James' employers, Premier Surfaces in South Forsyth, even held a softball fundraiser right before Dylan's surgery.
Six months after surgery, Dylan has learned how to play baseball and enjoys jumping on the trampoline.
"It's a miracle that he's not paralyzed and he's developing pretty rapidly as far as getting back on track," Nikki said. "He's a typical 3-year-old 'little monster' — his nickname is 'DD monster.'"