I came across this story this evening. It was really touching. Ann Arbor is not that far from here and I'm touched that there are still good people in this world
Kathleen Edward held a new friend’s hand and looked at the bright shelves of toys surrounding her this morning — and anything she wanted was hers. It was a 7-year-old’s dream.
A week ago, her family had been living a nightmare. Kathleen, of Trenton, has juvenile Huntington’s disease, a rare and aggressive version of the hereditary, degenerative brain disease that killed her mother in 2009 and her grandfather before that.
But that’s not what had the family down.
A feud between a neighborhood couple and the girl's grandmother, Rebecca Rose, led to cyber-bullying targeted at Kathleen and her deceased mother, Laura. The neighbors posted a doctored photo of Kathleen’s face with skull-and-cross-bones imagery on Facebook last week.
The feud started two years ago over a birthday party, Rose said, shaking her head.
“I’ve been living this nightmare for two years. A week ago, I thought no one cared,” she said.
Rose said Trenton police made her family feel like a nuisance for calling so many times with various complaints about harassment from the neighbors.
The neighbor couple, Jennifer and Scott Petkov, also posted a photo of Laura in the arms of the grim reaper on Facebook. Then they allegedly parked a pickup truck painted with death messages and a coffin in back outside Rose's home in Trenton.
Lon Horwedel | AnnArbor.com
Since the neighbors' actions, the story has generated attention around the world. In comments and online forums, again and again, people asked: “How could they?”
Ann Arbor toy store owners Hans and Tricia Masing of Tree Town Toys wondered that, too. Hearing of the incident made him cry, Hans admitted. They began to construct a fundraising campaign and then a day of a lifetime for Kathleen and her family. The idea took off.
“This exceeds our wildest expectations,” Hans Masing said.
“Anything you want is yours,” Simone, the toy store owners' 8-year-old daughter, told Kathleen Thursday morning shortly after she walked through the door.
Simone took the little girl’s hand, and together they walked toward the shelves and shelves of toys.
What did Kathleen think of it?
Her answer: more big smiles and a shy giggle. She put on a toy fireman's hat. Wide-eyed, she made her way around the store, stopping to play with toys along the way.
Before her foray at Tree Town Toys, a white stretch Hummer picked up the girl, her friends and family from Trenton; hot pink letters on its windows read "Team Kathleen."
The ride pulled into the shopping center at 9:30 a.m., escorted by two police motorcycles from the Ann Arbor Police Department. Two big Ann Arbor Fire Department trucks and a number of firefighters were outside the store to welcome her, too.
Her father, Robert, carried her from the limo to the crowd of dozens who showed up to cheer her on, holding signs of support and throwing rose petals. Kathleen’s entourage — among them children who also had juvenile Huntington’s disease and their parents — wore white T-shirts with messages of support and a picture of smiling Kathleen.
Simone Masing handed Kathleen a dozen red roses, and a clown gave her a balloon wand, which she carried with her into the store, down a red carpet lined with velvet ropes.
Inside were a magician, a white, three-tiered cake adorned with pink butterflies, and those toys. The first she picked out was a game worth $11.99 called “Froggy Toss.”
“It means the world to us that people came together to do something nice for her,” Robert Edward said.
Scott Petkov apologized with cameras rolling Wednesday from the street in Trenton; a face-to-face apology from the Petkovs might be impossible without violating personal protection orders Rose has against the couple.
Rose described Kathleen as a shy and fun loving.
“If she saw an ant on the sidewalk, she’d step over it,” she said.
The girl is just like her mother, she added.
“Laura never complained,” Rose said. “It was never ‘Why me?’”
Local magician Gordon Schott, also a “mild-mannered commercial real estate broker,” prepared a show for the many children who came to support Kathleen.
“This is what the real magic is,” he said, looking around. “You can take a disturbing situation and turn it into something like this, that’s so much bigger.”
Dave Stickles, president of the Huntington’s Disease Society of America - Michigan Chapter, said the attention the incident has brought to the disease is bringing in thousands of research dollars to his organization.
“It’s gone viral. It’s gone all around the world,” he said of Kathleen’s story.
His group is getting donations from as far away as New Zealand, about $5,000 so far.
Stickles’ best friend died from the disease.
Huntington’s disease devastates generations of families and hits adults in the prime of their lives, Stickles said. Since the onset of symptoms also coincides with adults’ prime earning potential, Huntington’s disease often leaves families economically devastated as well. While the juvenile version is rare, the prognosis is worse.
“Doctors say she should already be gone,” Rose said of the little girl’s medical condition.
The progressively destructive disorder devastates those afflicted with it, destroying their ability to think, speak and walk. There is no effective treatment or cure. Adults typically live 10 to 25 years after the onset of symptoms before succumbing to pneumonia, heart failure or other complications. Children live only five to 10 years after the onset of symptoms, according to Jessica Shinkonis of Lincoln Park, whose daughter, Cailey, 11, has juvenile Huntington’s.
Cailey and her mother came along with Kathleen’s party in the store, and Cailey and other children with Huntington's got the toys they wanted, too.
“Out of such a horrible thing, something so positive has happened,” Jessica Shinkonis said. “A nation has come together to show one little girl so much love.”
Donations have reached $17,000 for the fund set up by Tree Town Toys for Kathleen and others. What’s left after the spree will be put on a gift card and delivered to C.S. Mott Children’s Hospital. The Masings are donating any profits to the family.