MONTICELLO — The girl next door comes home from school every day to hang out with a boy doctors said might never speak or walk — and now plays basketball.
Fifth-grader Emerson Snook has created a race to raise money and awareness about the rare disease her friend has. First-grader Wade Jones is one of 50,000 children born each year with Cri du Chat, a genetic disease also called 5P-.
The name is French for "cry of a cat," and granddad Rick Timmons attests to that sound. It helped in Wade's diagnosis about three months after he was born.
In the Appletree subdivision, Wade has a best friend, Emerson, whom he calls Mimi.
Emerson will be running in Wade's 5K for 5P- on Oct. 6, a race she created with the family three years ago. It's the least she can do, she said, for "the most special boy in my life."
Wade can speak a few words, knows some American Sign Language and has his own special tricks, like snorting when someone mentions the Cubs, as he shows Emerson's mom, Karen.
Wade's mother, Megan, said the first diagnosis she heard was bleak.
The doctor opened a medical textbook "from the '70s, maybe, and said all these grim things like 'People won't live more than a couple of years, and should be institutionalized.'"
Snook and Jones sat on the floor and Googled the condition. They found more recent information that was far less dire.
Each year in this country, according to the Cri du Chat Research Foundation, 50 to 60 children are born with the syndrome.
Typically, those affected show from birth "a high-pitched cry, low birth weight, poor muscle tone, microcephaly (in which the brain does not develop properly, resulting in a smaller-than-normal head) and potential medical complications."
The foundation said children born with this genetic defect "will most likely require ongoing support from a team of parents, therapists, medical professionals, educational professionals and extended family members to help the child achieve his or her maximum potential."
"With the early-intervention therapies that they have, the kids do a lot better now," Jones said. Speech therapy is part of it.
It was once common to place children with the condition in institutions, but during the early 1980s, research showed that those raised in family settings with the benefit of early-intervention programs made remarkable progress.
Far from frail, Wade is an athlete of sorts.
With Mimi, he dunks a basketball, plays with the hyperactive dog Deuce, and — spelled out to prevent premature excitement — goes into the P-O-O-L or rides a specially equipped B-I-K-E.
That means he's very experienced at using the sign for "thanks."
Mimi knows her friend well. He likes to watch any kind of ball, she said, and his favorite food is rabbity: lettuce.
"Wade and I are best friends for life, and we love each other so much," she said.
Karen Snook said her daughter is a natural caregiver.
Emerson and Wade sit quietly next to each other in the living room.
Then Snook watches as Emerson takes Wade through a course of toys in the Jones' backyard.
Jones said Wade also enjoys the outdoors with his father, Chris.
"Since Wade was born, he has sat on Chris' lap and watched hours of duck- and goose-hunting shows with him," she said. "In fact, Wade is obsessed with duck- and goose-hunting shows. Wade loves to blow his duck and goose calls and to watch Deuce jump into the water to retrieve waterfowl. He could literally do both of these things for hours."
Jones said her family has been in the house a little over seven years.
"I think Emerson was at our house that day, and she's been here ever since. We call her Nanny," she said.
Whether she's Emerson or Mimi or Nanny, the fifth-grader always has something new for Wade to do.
One is the trampoline. Wade doesn't stand up on it, but as he lies on it, she jumps and tosses balls.
Snook notes that you can't separate Wade from his Puppy's Piano, which he plays several times a day.
"First thing out of bed, last thing at night," his mother agrees. "We go through four or five a year. I keep ordering them on Amazon."
Wade is in regular first-grade class, but also has special-education teacher, Karen Beauchamp, who said the boy is a jewel.
"He's very happy and loving. He loves being around the other kids. He runs very fast. He's the happiest little boy I've ever seen," she said, adding that his vocabulary keeps growing.
The scoop on Wade's 5K for 5P-
Lodge Park will be on the run Oct. 6.
Wade's 5K for 5P- starts at 8:30 a.m. in the Monticello park. This is the fourth year for the event.
The registration fees for the 5K run and walk are $30; the Fun Run for 12 and under is $20.
You can register for the race online at http://www.wades5kfor5p.com or by calling 217-369-1210, or use the same page to donate or sponsor a competitor.
"Even if you don't want to participate but want to make a donation, that would be very appreciated and I will pick it up for you," Emerson promised.