MAHOMET — When her daughter Avonlea was born three years ago, Jessica Etheridge recalled having a kind of tunnel vision about what life would be like.
Now, she says, she has more of a peripheral vision that includes a whole new group of friends in the local disability community.
“None of us are trying to fake it,” she said. “None of us have the family we ever thought we would.”
For the kind of help needed by Avonlea — who was born with a rare genetic mutation — Etheridge said she and her husband, Alex, have relied on Champaign-based Developmental Services Center “every step of the way.”
The Etheridge family, of Mahomet, are helping kick off DSC’s annual holiday-season fundraiser, Tree of Hope, which is set to get underway Thursday.
Jessica Etheridge said Avonlea, youngest of the family’s three kids, was named after the fictional town in the book “Anne of Green Gables.”
Avonlea was born with cardiofaciocutaneous syndrome, a non-hereditary genetic mutation that comes with cardiac abnormalities and a host of other issues.
Diagnosed with the syndrome at 5 weeks old, Avonlea has developmental delays and low muscle tone and consumes all her nourishment through a tube. She has multiple seizures a week, is unable to speak, sit up or walk, and is nearly blind, her mother said — and she has curly hair.
“All kids with this syndrome have really curly hair,” she said.
Avonlea was born 34 weeks into Etheridge’s pregnancy, and spent her first month in neonatal intensive care.
“We thought she was a preemie with a heart condition,” Etheridge said.
The news about their daughter’s syndrome was delivered by a geneticist, who warned them, “don’t Google this,” she recalled.
While there are things Avonlea can’t do, there’s so much more to know about her.
She knows her family and their voices. And she both gives and receives so much love.
“That feels like the biggest win in life,” her mother said.
Avonlea is working with a DSC speech therapist, who is teaching her to use an assistive device to push buttons with her head to communicate with her family.
“We’re at the early stages. She is learning three words: ‘go,’ ‘more’ and ‘stop,’” Etheridge said.
Because Avonlea’s near-blindness is related to her brain function and not her eyes, she’s also getting vision therapy to teach her brain to process vision.
“Even in the last year, we’ll see that she’ll reach out and touch a toy in a way she never has before,” Etheridge said.
Married for 14 years, Etheridge and her husband both work for the Christian ministry Cru at the University of Illinois.
Their two sons, Rhodes and Forrester, love their little sister and have become very adaptable and flexible, Etheride said.
DSC has also helped by providing the family respite care and by sending therapists to the family’s home to help with other aspects of Avonlea’s development.
As therapists have taught her new exercises to do with her daughter, Etheridge said, she’s also listened to their stories about other children they’ve worked with.
“I think those women were just what I needed. They have seen kids like her all the time,” she said.
They also helped her to build new hope and new dreams, Etheridge said.
“There’s a full life ready for us to live,” she said. “There are new dreams.”
Tree of Hope is DSC’s largest fundraiser of the year, and donations help support its programs and services for more than 1,100 adults and children with developmental and intellectual disabilities.
Progress in this year’s campaign will continue to be visible, as in years past, via the lights on a Christmas tree at the corner of Prospect Avenue and Marketview Drive in Champaign. The organization hopes to raise $230,000, and each lighted bulb represents $50 in contributions.
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