GUILDERLAND — Demi Robinson of Guilderland, a fourth-grader at Lynnwood Elementary School, doesn’t think she has any residual effects from the rare condition that left her paralyzed on one side of her body and mute when she was 3-and-a-half. There isn’t anything her classmates can do that is harder for her, she says.

Demi went from not being able to stand on one foot when she started taekwondo lessons five years ago to earning a black belt this month.

Her mother, Sara Robinson, recalled, “They never made any exceptions for her. That’s how we wanted it.” 

Robinson says there are a few things Demi is still working on: She needs to keep building her core strength, and she is in speech therapy because she sometimes has trouble retrieving a word.

Robinson and her husband, Dwayne Robinson, want to tell Demi’s story for the sake of other parents whose children are suddenly overcome by the syndrome that left their only child unable to stand or speak. 

At their spacious home in Guilderland’s Twenty West development, Dwayne Robinson said, his voice catching, “We were like, if God blesses us with a good ending, we’re going to work for the rest of our lives to make sure no other family has to feel that they’re alone out there. 

He wants their experience to serve as “a little bit of a playbook.” 

He credits three activities with saving Demi: physical therapy, therapeutic horseback riding, and taekwondo.  

Descent 

In the summer of 2013, Demi was diagnosed with a rare brain tumor that affects children. 

The first signs of illness were that she would spend several days lying on the couch after waking up and vomiting. She would then be dehydrated, and her parents would take her to Albany Medical Center, where she would be admitted for several days and given nutrition. 

She would get better, and then the cycle would repeat, her father said. 

That fall, Demi developed hydrocephalus, her father said, and also contracted pancreatitis and the bacterial infection known as C. diff. 

Doctors were unsure what was wrong, her parents said, and initially thought it might be Crohn’s disease. 

Demi then had a number of absence seizures — where she would blank out for a few minutes — and, finally, a large seizure that her father thought might have been a stroke. The Robinsons took her back to Albany Med, and this time a neurologist ordered a CAT [computerized axial tomography] scan, which revealed a three-inch mass at the back of her brain. 

Doctors immediately inserted a ventricular drain into her skull, to drain the excess cerebrospinal fluid that had accumulated, due to the size of the tumor. 

The next day, her parents learned, Demi would need brain surgery to remove the tumor. 

In the waiting room during the surgery, Dwayne Robinson recalled, “We were devastated, and all we had in our lives was each other.” 

Immediately after the eight-hour surgery — which had been very successful in removing the tumor — her mother recalled, Demi coughed out her breathing tube and asked for some water. 

That was the last time she would be able to speak for weeks. 

Beginning a few hours after the surgery, she became paralyzed on one side, had no facial expression, and was unable to swallow properly or eat or drink. 

Demi needed a feeding tube for nutrition, her parents recalled, and lay in her hospital bed like a ragdoll. 

“We diagnosed it ourselves,” said Dwayne Robinson. 

They had found online a foundation called the Danny Green Fund, in the United Kingdom. It was started by a family whose son had died from Fossa Posterior Syndrome, a rare condition that sometimes plagues children after brain surgery. 

The symptoms, the Robinsons agreed at the time, were exactly what their daughter was experiencing. 

Sara Robinson brought this up to the pediatric neurosurgeon at Albany Med, who agreed that it was apparently what Demi had. 

The Robinsons were afraid they would lose their daughter. They each had lost a parent to cancer, and thought that Demi would be next. 

Doctors did not know much about the syndrome, the Robinsons said, and could not tell them how much she would recover, or when. 

The couple has joined a Facebook group for families dealing with the condition. The closest family in the group is in Pennsylvania, said Dwayne Robinson. 

Rise 

One of the pediatric neurologists at Albany Med recommended that the Robinsons look into Blythedale Children’s Hospital in Westchester County, where he had worked previously, because it has a specialized traumatic-brain-injury unit and caters to children. 

He told the couple that, if Demi’s brain were going to recover, the first six months were critical. 

“We immediately realized that those six months were what we had. We locked up our house and we moved to Westchester,” Dwayne Robinson said, even though there was a generalized inpatient rehabilitation center 15 minutes from their home. 

The Robinsons had been told they might need to stay at Westchester for two to three months. 

When they left home, their insurance company had not yet agreed to cover Demi’s treatment, but the facility had told them, “We’ll figure something out.” 

Blythedale offered Demi a rigorous schedule of physical, occupational, and speech therapy for six to seven hours a day, five days a week, including one or two hours a day in a stander. 

Only one parent was allowed to stay in a child’s room at Blythedale, so Sara Robinson stayed, while Dwayne Robinson stayed at the hospital’s home for parents. In his room there, he set up a computer and printer so that he could continue to run the couple’s two businesses. They have one company that sells golf simulators and also own a cleaning company. 

Again, the Robinsons’ endless googling of Demi’s condition paid off. They discovered that Prozac can sometimes help children regain their speech and other lost abilities, said Dwayne Robinson, and the couple brought it up to the staff at Blythedale. 

“They were very receptive,” and soon gave the OK to try it, he said.

It was a week after Demi got the first dose, her father said. He had been pushing her through the halls in a wheelchair, and he heard a “scratchy voice,” he said, directing him to turn a certain direction: “‘That way.’” 

Those were the first words Demi had said in almost a month. 

The Robinsons stayed at Blythedale for 30 days, and by that time had a good understanding, they said, of what Demi’s treatment consisted of. They believed that she might recover faster at home, in familiar surroundings. 

The team at Blythedale  was supportive, they said, of their request to take Demi home and continue therapy with her at home. 

Balance 

After returning home, Demi did one hour each of physical therapy, aqua therapy, occupational therapy, and speech therapy, her mother said. 

Therapists recommended that she try taekwondo, and also therapeutic horseback riding, to improve her balance and her core strength. 

“We didn’t know how much was going to come back,” her mother said, “but we took a chance and committed to that. Her schedule was full and so was ours.

“We did everything you could possibly do,” she added. 

Demi started both of those activities when she was 4. Horseback riding helped her develop core strength “so she could walk, run, etcetera,” her mother said. 

Demi has been doing taekwondo for five years now. 

Students in taekwondo often need to stand on one foot, Sara Robinson said; therapeutic horseback riding is also known to help with balance and strength. 

When Demi first started horseback riding, at a facility in Gansevoort, her mother said, she couldn’t even sit up on the horse without someone holding her. 

There was a dojo closer to the family’s home, but they chose Pai’s in Clifton Park because Grand Master Kwang Pai was “very nice and welcoming,” and because there were more girls among the students than at other schools they visited. 

One teacher there told Demi once, early on, “Demi, you gotta balance; it’s all right here,” pointing to his head. 

She absorbed that advice, her mother said. Pai’s students compete in tournaments against one another, and in her first one, when Demi was in kindergarten, she came in first. 

Demi received her black belt on Nov. 9. 

Grand Master Kwang Pai, who has dojo in Saratoga as well as the one in Clifton Park, said, “I’m really proud of her. I’d like to see her continue on.” Taekwondo helps children develop not only physical confidence, strength, and hand-eye coordination, he said, but also the confidence to make good decisions. 

What does Demi like about the martial art? 

“It gives me more confidence and strength,” Demi said. 

To qualify for a black belt, Sara Robinson said, Demi had to run for 50 miles, which she did around the neighborhood and in their cellar on a stationary bike; run 2 miles in 22 minutes; write a thank-you letter righting wrongs; attend 55 classes; perform 5 hours of community service, pass a written exam, write a 400-word essay, and create her own personal form. 

Her father reflected, “A couple of years ago, I decided I have to let her be a normal kid, I have to let her be on her own and see what she can do. It’s hard because you realize how delicate all children are.” 

Demi is probably stronger now for all of this, her father said. “She works a little harder than everyone else just to do what they do easily.” 

On the other hand, he said, it is “probably a blessing” that Demi doesn’t remember any of the period around her surgery. 

The couple, who moved to Guilderland from Niskayuna in 2016, said they had kind of hoped that, after Demi got her black belt, she might not want to continue, and they might get a break from the long drive to taekwondo in Clifton Park. 

No such luck. Demi said her goal now is to get her second-degree black belt. 

Her parents said with a laugh that they would miss the close friends they have made through taekwondo if she were to stop. 

They may not have to worry about losing touch with those friends. There are a total of nine levels of black belt in taekwondo.