Brittney Lohmiller Photography
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Michael Ecker, 8, of Midland relaxes at home while watching T.V. Ecker was diagnosed with, Angelman Syndrome, a rare neuro-genetic disorder effecting 1 in 20,000 people. Angleman Syndrome causes seizures, difficulty sleeping, and most people effected never speak. "He's just got a funny disposition," Barb Ecker, Michael's mother said. "He's just a funny little fella. He'll see things; he was watching a television show and someone tripped on TV, and we all think that's hilarious, but he just started laughing. And then of course, we all started laughing because he's laughing."
Michael's mother, Barb, tries to help him dry off his hands after washing them causing Michael to burst out into laughter. "I wish I could bottle his happiness and joy." said Barb. She and Michael's father, Mike, are working to potty train Michael and hope that one day he'll be able to tell them not only when he needs to use the bathroom but what he needs and wants. Though his seizures are now under control and he attends school three days a week but at 8 years old Michael hasn't spoken a single word.
While waiting for his bathtub to fill, Michael watches the water coming out of the faucet. Like most people affected with Angelmans Michael is fascinated by water. He loves swimming, turning on the kitchen sink, and splashing in puddles whenever he has the chance. "Barb will take him swimming in the summer a lot," Mike Ecker said. "He'd stay in the pool all day long if he could."
After playing outside and swimming all day Saige Ecker and Michael rest in Michael's room. Being Michael's older sister, Saige helps her parents out with caring for Michael, whether helping him drink a glass of water or making him laugh. "Saige is one of Michael's idols," said Barb "He just likes to be in her company. They've got a lot of love to share, and it's so pure. It's unconditional."
Mike comforts Michael after he pinched his fingers in the car door during a family reunion. "He'll cry for a bit but after a hug he's right back to smiling and giggling." said Mike, "It takes a lot for the tears to stay longer than 5 minutes."
Caleb LaMer of Grand Rapids guides Michael back inside the Midland Evangelical Free Church during a week long summer camp at the church. LaMer spent the whole week with Michael as his personal camp counselor allowing Michael to participate in camp activities like the water slide.
Michael dances with his older sister Saige while their father, Mike Ecker, plays the guitar. "His world is definitely different from ours." said Mike, "Sometimes we forget what his type of fun is, which might be trying to get the trash lid off for 5 minutes."
Michael plays in the living room window of his Midland home. The Eckers started to sense something was wrong when Michael had a grand mal seizure when he was nine months old. "He wasn't even sitting up as a child," his father Michael Ecker said. "That's how we knew that something was wrong. He had no core strength at all. At the beginning, we were wondering if he was even going to walk." Michael's seizures are now under control with oral medication but at eight years old he still hasn't spoken a word. "We hope that one day we will get to hear his opinion, even to hear him say 'no' would be a huge accomplishment." said Mike Ecker.
After having trouble focusing in school, Kim Bauer, Michael's aid takes him outside to walk around. "Sometimes he just needs to be in a place where no one tells him 'no' or tells him not to do anything." said Bauer, "The fresh air and ability to be in his own world really helps calm him down."
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