A volunteer organization brings ‘Whoville’ to the home of a Virginia boy with a terminal illness – The Virginian-Pilot

FALMOUTH, Va. — No one’s really sure how far Liam Jackson will be able to see again due to damage from a terminal brain disease.

But when the kindergartner and his family came home one recent afternoon to find their front yard in Falmouth had been converted into a replica Whoville, Liam’s siblings started chatting about a certain character with a spiky red hat and long green fur.

“Grinch, the real Grinch? Is he here?” Liam asks while still in the vehicle. “I have to meet him now.”

His parents, Stephen and Madeline, held the 6-year-old by the hand as he carefully walked through the Whoville Post Office and repeatedly opened the door of the wooden chop labeled as the Grinch’s home.

More than 60 neighbors, staff from Falmouth Elementary School and members of the Stafford Sheriff’s Office, who appeared in a motorcade of motorbikes and cruisers with flashing blue lights, cheered and called his name.

“We bring Whoville to you, Liam,” said Joni Moore Kanazawa, who heads the Fredericksburg-based organization Ellie’s Elf. Named for Ellie Blaine, who was 2 years old when she died of cancer, the volunteer group supports other children facing terminal illnesses and their families.

Kanazawa orchestrates the event after learning of Liam’s attachment to the character Dr. Seuss. While the rest of the world may think he’s as fun as a cactus, the Grinch is Liam’s favorite superhero because he saves Christmas, his mother says.

“You can’t convince him otherwise,” she said. “One day he told me, apart from Jesus who is No. 1, Grinch is No. 2.”

Captain Lee Peters is with the Stafford Sheriff’s Office of special operations and his job takes a slightly different turn when he dons the Grinch costume. A board member with Fairy Ellie, he also played Mickey Mouse – and said he was really hoping for something more like a Marvel superhero.

But as Kanazawa emphasizes, the point of the show is to provide a fun experience for Liam and his family, and Peters is more than happy to oblige.

“It’s all about making memories,” said Kanazawa. “While he still has eyesight we are going to let Liam see this fuzzy character in colorful pants.”

Liam started kindergarten last fall and absolutely loves school, says Sallie Burch, head of Falmouth Primary School. She was dressed in green and looked like a fairy as part of the Whoville look.

Liam’s teacher, Audra Gulick, was also at the Jackson home, along with other staff from a nearby school. Gulick said Liam brightened his day.

“He was always like a light, a bright shining light,” she said. “He’s very sociable and the kids love him.”

In late fall, a bus driver noticed that Liam was having trouble getting up and down the bus steps. He mentions it to the school nurse and Gulick, who talks to Liam’s parents.

The tests started and the family got some news no parents wanted, and it was Liam’s sixth birthday in January. He has a genetic condition called cerebral adrenoleukodystrophy, a disease in which the white matter of the brain gets progressively damaged. Eventually, the nerves stop relaying information to the brain, causing all systems to shut down.

The Jacksons initially thought they would have a few more years, but Liam’s condition deteriorated so quickly, doctors said he wouldn’t last that long, family members said. No treatment.

Peri Ellie, along with staff at Falmouth Elementary School, has been helping with food and expenses for the Jacksons. Liam is the oldest; Stephanie is 4 years old, Damon is turning 3 soon and they are expecting their fourth child in August.

The sudden news of Liam’s illness has devastated the family, says Charlene Taylor, Madeline Jackson’s sister. She is also a hairstylist and one of her clients is Kimberly Anderson, a volunteer at Elf Ellie.

As the two talk during their hair appointment, Taylor mentions Liam’s fondness for the Grinch. Anderson shared those details with Kanazawa, and the wheels started turning rapidly.

In 2015, Fairy Ellie created the Whoville scene for Ryan Mott, who has brain cancer and gets to enjoy all things Grinch during his last Christmas. He died in 2016 at the age of 9.

Kanazawa did not want the Whoville School’s woodcuts and other building façades to be kept, so groups of volunteers used them to decorate the floats during the Christmas parade. They also let Susan and Ralph Cooper add it to their Christmas decorations on Ramoth Church Road.

Kanazawa borrowed it back from the Coopers for blitz decorations. He turned to Peters for help, then he enlisted some of his fellow officers. He expected three or four but got more like 12.

“When word got out it was for a child, people showed up,” says Peters.

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The Jacksons received permission from their homeowners association to store Christmas decorations for two weeks in late February and early March.

While Liam enjoyed the cut, the interactions with the Grinch were his favorite. Liam also wore lime green Grinch pajamas and his little brother wore Max, the Grinch dog costume. The Jacksons hoped to dress Stephanie like the Cindy Lou Who but couldn’t find a costume so she wore something sparkly.

Liam giggled as the Grinch tucked Max under one arm and Stephanie under the other and pretended to run away with him. He smirked as the Grinch hid behind the cutout and peeked around the corner at him.

As the Grinch tickles Liam’s cheek with his long fingers, Liam says: “He has soft hands.” Someone else mentioned the Grinch needed to shave his knuckles and Liam replied in defense: “No, he didn’t.”

Liam’s mother has a hard time finding the words to thank everyone who shows up in her yard. He was on his way home from visiting relatives when he was caught behind a police motorcade.

“I thought, that’s for us,” she said, fighting back tears. “I appreciate everyone, I mean, it’s just amazing to see. And Liam loves it.

In the words of Dr. Seuss, Kanazawa posted on Facebook after the event that “all of our hearts grew three sizes today.”

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