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Treatment gives child with rare disorder new hope

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The noises and coos were little more than the garble of gibberish.

But even someone who had just met Aidan Fox could tell that he was happy.

The 3-year-old Whiteland boy had parked himself in front of the sliding glass door in the Foxes’ kitchen, watching the family’s two Boston terriers jump on the other side of the glass.

Aidan can’t walk, barely crawls and doesn’t speak in words and sentences. His parents have learned that their son has a language all of his own.

Aidan was born with dystonia, a rare movement disorder that causes the muscles to contract and spasm at random. Though often confused for cerebral palsy, the condition calls for an entirely different set of treatments and medications.

The Fox family hopes that a new device will allow him to one day have conversations and participate in school.

“He has a little bit of communication, but it’s very slow,” said Sunshine Fox, Aidan’s mother. “He communicates to us with his body and his eyes, but to someone who doesn’t know him, you wouldn’t know what he wants. This will give him a voice.”

Caring for Aidan is a full-time job for Sunshine Fox, 34, who has stopped working to take him to doctor’s appointments, school and therapy.

He attends developmental kindergarten through Clark-Pleasant Community Schools three days a week and has physical, occupational and speech therapy the other two days.

Darrick Fox, 37, is able to support the family through his work at Hisada America in Edinburgh.

Aidan’s older sisters Kendra, 12, and Alissa, 9, have become skilled at feeding, bathing and caring for their brother.

“This has changed their lives. They want to go into the field of special needs,” Sunshine Fox said. “They’ve seen every situation that comes with it already.”

Even while Sunshine Fox was pregnant with him, Aidan proved to be a difficult child that Kendra and Alissa never were.

Aidan failed many of the nonstress tests given during the pregnancy, exhibiting little movement in the womb. When he was born, he was small, weighing in at 5 pounds, 15 ounces.

“He always seemed to have a hard time growing. They called it, ‘failure to thrive.’ We had to work with making his formula a higher concentrate, trying to get him to grow,” Sunshine Fox said.

But his parents recognized that something serious was wrong with their son when he was 4 months old.

He had trouble tracking with his eyes. When his parents spoke to him, he refused to make eye contact. He also started having tremors and shaking uncontrollably.

Doctors initially suspected cerebral palsy, since Aidan wasn’t developing movement and awareness that typical babies have.

But when he was 18 months old, Aidan started having trouble controlling his muscles. He also regressed developmentally, losing the ability to crawl, stand and grasp items.

“We knew at that point it was something beyond cerebral palsy. But it took us two years to find a doctor who could properly identify that it was dystonia,” Sunshine Fox said.

They saw numerous doctors throughout Indiana trying to classify what the problem was. Most movement specialists had never seen a disease that spread through the body at random.

At each visit, the Foxes heard the same thing — “I don’t know.”

“It was very discouraging as a family not knowing. They wanted us to wait and see, wait and see. But he was getting more and more delayed,” said Darrick Fox, Aidan’s father.

Not until they saw Dr. Lawrence Walsh was Aidan diagnosed with dystonia.

Dystonia is the broad term for a wide array of genetic conditions that affect movement. For some patients, it is restricted to just one part of the body — a hand that spasms, or leg muscles that won’t work properly.

For Aidan, the condition is general, meaning it affects his whole body.

“It travels. It may affect a leg one day, or an arm today,” said Sunshine Fox.

The disease prevents the body from forming the normal amount of dopamine, a chemical that allows the nervous system to communicate with the muscles.

Walsh, the only doctor in Indiana who specializes in dystonia, started Aidan on a regimen of dopamine replacements. Because the chemical can make people sick if given too much, the dosage has slowly been increased since last summer.

The Foxes already are seeing improvements.

Aidan is much more vocal than he had ever been. He can’t talk in sentences, but he can say, “dada” and “mama.” He calls his iPad “Paddy,” and one of their dogs “On-ya,” because his mom kept saying the dog was “on ya” when he’d lay on Aidan.

A small chance remains that treatments can negate the effects of the condition.

“It could preserve his situation, or restore, fully restore. But we have to be prepared, if it is, for the worst-case scenario,” Darrick Fox said. “Everybody is different how it progresses.”

Developmentally, Aidan has the physical body of an 8-month-old child. But his cognitive skills are improving and are nearly age appropriate.

In order to make sure that Aidan continues to develop, the Foxes are pursing new technology that will give him a voice.

Most existing communication devices work with a button or a switch that allows the user to speak. But Aidan doesn’t have the coordination to manually turn on a device.

EagleEyes is a machine where sensors are placed on the face of users. Those sensors detect eye movement and allow people to use a computer by simply looking at the screen and moving their eyes.

The Foxes are partnering with the Opportunity Foundation of America, a nonprofit that distributes the device to the disabled, to purchase one. With a grant from the foundation, the family hopes to receive one of the machines in the coming months.

The only cost the Foxes are responsible for is $1,000 for the devices, as well as to pay for a specialized trainer to come to Indiana for three days and help the family learn to use EagleEyes.

To raise the money, the family has set up a crowdsourcing fundraising site at Go Fund Me.

SouthPointe Church in Whiteland is hosting a community yard sale for them this weekend.

The speech device is just the first tool the family will need to support Aidan. They will eventually have to install a handicap-accessible bathroom on their home’s first floor.

The family also will need a van that can load and unload Aidan’s wheelchair as he gets older.

The Foxes also are hoping to use the event to raise awareness for dystonia. Because only about 300,000 people have been diagnosed with it in the U.S., the disease is often overlooked, even by doctors.

Most of the time, it is misdiagnosed as some other movement disease until adulthood. By the time doctors do finally realize that patients have dystonia, they are so far behind their peers that it can be all but impossible to catch up.

“It’s such an uncommon condition, we’d love to see other people at other stages of their lives in this condition. To connect with them, get more information and get more networking,” Sunshine Fox said.

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