LIMA — Remy Hefner is 17 months old and has a disorder that causes her to have small tumors on her body.
She has had 22 visits since July 24 to the Cleveland Clinic. She has seen a neurologist, cardiologist, ophthalmologist, pediatric specialist, dermatologist, urologist and hematologist and genetics doctor.
Her mother, Jennifer, was a manger at Dollar General in Lima and had to step down from her job to care for Remy. She now works at Jackson-Hewitt in Lima. Her father, Mark Hefner, recently was laid off from his job and stays at home to care for Remy and her two brothers, Oscar, 4, and Felix, 3.
Jennifer came up with the idea of having the community send her daughter Christmas cards.
“I saw a Facebook post a month ago of a child in another state with cancer who got Christmas cards from their community
and I thought it would be a great way for our community to show she is loved,” Jennifer said.
She said Remy loves to open things in the mail.
“I want Remy to know as she grows up that people are there for her and care about her,” Jennifer said.
Even though Remy has been through a long health journey, she always has a smile on her face, according to her mother.
She loves to play with her brothers and likes Frozen and dinosaurs and her mother said she is a good kid who doesn’t usually cry.
Remy is not able to talk, only saying “mom.” Children with nF1 don’t usually talk until they are 3 years old Jennifer said.
Remy was born July 3, 2018, at St. Ritas Hospital in Lima weighing seven pounds six ounces and was a healthy baby.
At her six week checkup she was diagnosed with a disease, pectus excavatum, where her chest wall had a deformity and was smaller than it should be.
“I knew something was still wrong as she had trouble breathing and she had an xray done and blood work and her white blood cell count was an indicator of childhood cancer,” Jennifer said.
Remy was rushed to Nationwide Children’s Hospital and was diagnosed with nf1/neurofibromatosis in August. On Monday she will have a triple scope and a non evasive surgery at Cleveland Clinic on her throat to help her breath easier.
Nf1 causes tumors on the body’s nerve endings and Remy has fibromas on her chest, shoulder, stomach and spine that causes her to itch. The family will stay at the Ronald McDonald House while Remy receives her surgery and stays there when she goes for treatments.
The family will participate this spring in a Midwest NF walk for children with nero fibromitosis. They are planning a benefit concert for next October in Lima for the community to raise funds to help with Remy’s medical expenses. Molly Braun, who manages Fort Wayne Indiana based band “Creep” is helping organize the benefit.
Christmas cards for Remy can be mailed to her home at 559 Cortlandt Avenue Lima, Ohio 45801. The community also can follow Remy on Facebook at Remynyxrfr or at Rock For Remy.
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