Good vibes, real devotion at Genesee lemonade stand

GENESEE — Hailee Zollman worked her lemonade stand Saturday like a savvy customer-service professional, warmly engaging people as they walked up her family’s driveway.

“There is brownies, there is good bars, there is Rice Krispies and there is cookies,” she informed one customer.

Then the 8-year-old, wearing a bright yellow apron over a light colored romper, turned up the charm.

“Hi, you are adorable,” she said to the woman’s infant daughter. “How old is she?”

After learning the answer — 1½ — Zollman made another pitch.

“There is Keasy bracelets over there and a story about Keasy.”

The sky blue wrist bands carried the message “#KeasyStrong – Cure CMN & NCM.” Zollman’s lemonade profits are being donated to researchers trying to unravel the mysterious ailments those acronyms refer to.

And Keasy is 3-year-old Keasy Line of Viola, who suffers from them. She was born with the two rare disorders. The first, giant congenital melanocytic nevi, affects about 1 in 500,000 newborns.

“Basically she has a giant mole that covers over 50 percent of her body — her whole back, tummy, diaper area and both legs down to the knees. She has small spots from the top of her head to the bottom of her feet,” said her mother, Shea Line, during a telephone interview. “It’s like a mole you or I might have but on a much larger scale.”

The second ailment is neurocutaneous melanosis. Which means she also has moles or spots on the tissue that surrounds her brain. Combined, the two ailments affect only about one in 1 million children and come with serious health challenges.

The exterior moles, which appear like birth marks, make children with the disorder susceptible to melanoma, an aggressive form of skin cancer. The spots on the tissue surrounding the brain can cause seizures.

Keasy, who wore a fruit-themed bucket hat shading her face, long pants and a long-sleeve shirt under a yellow apron to match Hailee’s, has suffered from both. The seizures started when she was just 2 months old but were eventually controlled by a strict ketogenic diet.

“She is two-and-a-half years seizure-free,” said Judy Barnes, Keasy’s maternal grandmother.

Keasy was diagnosed with melanoma last December. Three surgeries later and she is cancer-free and now doing her best to be a regular kid.

“She is just a normal 3-year-old,” Barnes said. “Full of sass and spunk and we think Hailee is a special little gem for just loving her little friend the way that she does and devoting her day to Keasy.”

In an effort to stay healthy, Keasy’s family makes sure she adheres to a strict diet, stays out of the sun and is checked daily for any color or shape changes to her moles that could signal trouble. They make routine visits to Seattle Children’s Hospital where Keasy has a team of doctors and consult Dr. Miguel Reyes-Múgica of Children’s Hospital of Pittsburgh, the world’s leading researcher into the disorders, which are caused by cell mutations during early fetal development.

Hailee wanted to do something to help her friend and other children with CMN and NCM, so she is sending her lemonade profits to support the Gavin Bailey Tissue Repository for Neural Crest Disorders. The repository, run by Reyes-Múgica, collects and studies tissue samples from children with the disorders.

“We are doing a lemonade stand because I want to help Keasy with all her dots and I want to make her feel better,” she said. “I have known her her whole life.”

The lemonade stand was a popular stop at the Genesee Community Yard Sale, an annual event where many people in the small Palouse community hold sales.

“You can’t drive down a street and not hit some kind of yard sale,” said Rhonda Zenner, who was handing out maps showing where the 40 or sales were located. “It’s a whole town yard sale. If you come up here, with all these sales, you will find something. There is such variety.”

Barker may be contacted at ebarker@lmtribune.com or at (208) 848-2273. Follow him on Twitter @ezebarker.

More information about the disorders and the tissue repository, including how to donate to it, is available at givetochildrens.org/GCMN-NCM.