At five years old, Megan Rust received her diagnosis: She had mucolipidosis II, or I-cell disease, a rare condition that causes critical enzyme deficiencies. The doctors said she would not live to see her eighth birthday.
For years, she proved them wrong.
The Hillsboro High School student, known for her vivacious personality and passion for cheerleading, passed away last Thursday, Jan. 11, shortly after saying goodbye to her family at home.
She was 14.
Those who knew Megan said she had a way of drawing people to her — whether through her cheerful demeanor or her constant demands for attention, she would wrap people around her finger and keep them there.
She loved French toast and spaghetti almost as much as she loved candy.
She loved cheerleading and singing and dancing and spending time with her friends.
She loved giraffes, and the color purple.
But according to her mother, Melissa Rust, one of Megan’s most memorable traits was her stubborn defiance of grim diagnoses.
“Until the day before she died, she said, ‘I’m not giving up without a fight,’” Melissa Rust said. “She did things on her own terms and in her own way… The doctors would say, ‘You can’t do this,’ and she would go out of her way to prove them wrong.”
Due to enzyme deficiencies, fatty substances and complex carbohydrates built up in Megan’s tissue cells. She was plagued by orthopedic maladies for most of her life, and had to have multiple surgeries.
Last year, she had to have her hip joint removed due to an infection, and although the doctors said it was possible she could walk again, she never bounced back.
In November of last year, she was diagnosed with congestive heart failure. Two weeks ago, she became very ill, but Rust said she held on for as long as she could.
“She was just an amazing blessing of a child,” her mother said. “Our hearts are empty without her.”
In an effort to pay off funeral costs, Megan’s teacher, Ben Miller, and Miller’s aide, Teresa Stout, began selling T-shirts to HHS students and those who wished to donate.
The T-shirts are purple, with a white giraffe on the front and #MeganStrong on the back.
“We originally designed the shirt to help with final expenses for the family,” Miller told The Times-Gazette. “We understood that with her condition, things were pretty expensive. We just wanted to help Megan.”
Miller said he first met Megan when she was in eighth grade at an intramural program he had organized at Hillsboro Middle School. Later, he taught Megan in the high school’s special education room.
“She was a great student and a great person,” he said. “She clung onto you, and once she got ahold of you, you were hooked. We just wanted to make sure she got what she deserved.”
Stout said she believes it was God that brought them together.
“She was an amazing kid,” Stout said. “She was just one of a kind… We were best friends. We crossed paths for a reason, and I thank God we did. It’s a big loss.”
Stout said the T-shirt sales have already surpassed $2,000, and coordinators are still taking orders.
T-shirts are available for $15 in sizes from youth to 4XL. To place an order, call Stout at 937-402-7240, or call the school at 937-393-3475.
Miscellaneous donations are also accepted.
Another fundraiser currently being coordinated is a gift basket raffle organized by school secretary Angie Juillerat.
Juillerat said the basket, which is still being assembled, is expected to be worth about $1,000. Raffle tickets are set to go on sale for $1 each or $6 for five at some point next week.
“She was a candy-holic,” Juillerat remembered. “She just always made you smile. It didn’t matter how sick she was or how badly she hurt, she would come in and it would be, ‘Hey, how are you Angie?’ and she would talk to me. She demanded attention, that’s for sure.”
Juillerat said in the days after Megan’s passing, the whole school was quiet.
“The day we found out she passed away, it was very somber,” she said. “I think now we’re in the mode where we’re thinking, ‘OK, how what can we do to help?’”
Melissa Rust expressed her gratitude to the fundraiser coordinators, saying, “I want to say how thankful we are for everything they’ve done in her name to honor her. She would have loved all this attention… I’m glad I got to share her with everybody.”
Miller said while Megan’s presence at the school is gone, the impact she made on the lives of her friends and family is alive and well.
“Megan was loved,” Miller said. “She was loved and cared for by a lot of people. She touched a lot of lives at Hillsboro City Schools, and she will not be forgotten.”
Reach David Wright at 937-402-2570, or on Twitter @DavidWrighter.