Raising awareness

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Bedford couple share struggles of Sunflower Syndrome

By Tom Wilmoth

    Matt and Davannah Byers are hoping to spread the word.

    Their 8-year-old autistic son has a rare form of photosensitive epilepsy and they want to raise awareness about the condition.
    And maybe even help another family who is going through the same struggles they face on a daily basis.
    “We want to reach other people,” Matt said.
    They said only three in 10,000 people have photosensitive epilepsy, in which flashes of light can cause a seizure. Logan’s case is even more rare because he can self-induce seizures using his hands. For Logan, it’s a compulsion. The Byers family, who live in Bedford, call it Sunflower Syndrome.
     The photosensitive epilepsy means that the family must keep Logan away from flashes of light such as the sun shining through shades or through the leaves of a tree. The fact that he has a compulsion to self-induce a seizure means that he can’t be out of their sight for more than a few seconds.
    Logan can induce the seizure by flashing his hand in front of his face, triggering the photosensitive epilepsy. Matt and Davannah say he may try to do that several hundred times a day.
    At first Matt thought it was a way for Logan to relieve stress. “I thought it was harmless and helping him,” Matt said.
    But that wasn’t the case. Instead it was a way for Logan to try and trigger the “euphoric” feeling of a seizure.
    “I want others to know it’s not safe; it’s not harmless,” Matt said.
    Trying to minimize the opportunities for Logan to induce a seizure is a 24-hour-a-day, seven-day-a-week effort.
    In some ways, “you kind of feel like a prisoner in your own home,” Davannah said.
    They homeschool their children—they have five in all—and even taking a car ride can be an ordeal.
    “It takes two of us to go anywhere,” Matt said.
    And Logan doesn’t necessarily appreciate the help.
    “He gets angry if we try to stop him,” Davannah said of Logan’s compulsion to try and induce a seizure through “flashing.”
    And he tries it hundreds of times a day. “It’s getting harder and harder to control,” she said.
    Matt made a Facebook page for their son called “Autism, Epilepsy, and Logan.” Followers are encouraged to watch Logan’s journey. The page has more than 1,100 “likes.”
    They have found two other families going through similar struggles.
    Logan is on medicine, but Matt said there isn’t any real research into this syndrome. “We have nothing to go on,” Matt said.
    The couple realized Logan had autistic tendencies when he was about 15 months old. He had his first seizure in the fall of 2011. The self-induction began a year ago.
    An eye patch can help control the seizures, but the couple said getting an 8-year-old to wear that isn’t easy, because of his compulsion to self-induce. When Logan has that compulsion, Matt said he’ll do just about anything to try and self-induce a seizure. “Nothing is more important to him in that second,” Matt said. “It’s completely encompassing (him).”
    Their goal is to get the word out about Logan’s syndrome. “The more people who know about it, the more likely we are to get an answer,” Matt said. “I know there’s a fix.”
    Logan’s younger brother, Austin, keeps watch over Logan. Matt and Davannah say Austin is Logan’s angel. Austin is constantly helping his older brother and helping to take care of him. “He will put his entire life on hold to support his brother,” Matt said of Austin’s concern for Logan. “We’re not asking him to do this. It’s just in his nature.”
    Logan does love the beach and the family tries to take a trip there once a year. “That’s the one time we seem able to feel semi-normal as a family,” Davannah said.
    Their biggest problem, Matt said, is that there just isn’t the research into this syndrome and it’s trial and error with medicines. “We’ve been on this roller coaster since 2011,” he said.
    Davannah said dealing with this issue is scary as a family: “I can’t even imagine what is going through (Logan’s) mind,” she added. “We just want to offer him the best possible life he can have.”