UHCCF grant helps a young girl with rare condition learn to communicate
Ellie’s story
Christy and Alan Naughton’s world doubled in an instant.
“We found out we were having twins when I was nine weeks pregnant,” Christy said.
“It was surreal,” added Alan. “I don’t think we realized how much extra two babies would be.”
The Naughton family quickly grew to five as Christy, Alan and big sister Scarlett welcomed twins Ellie and Ivy into the world.
Amid the chaos of adapting to their new normal, Christy and Alan noticed Ellie was not sleeping or gaining weight.
“It was just kind of a vicious cycle. She was hungry, so she wouldn’t sleep, and then she was tired so she wouldn’t eat,” Christy said. “We went to see the gastroenterologist and they put a feeding tube in her nose to help her gain weight.”
Ellie was able to gain the weight she needed and was sleeping better, but doctors recommended they see a neurologist after Christy and Alan noticed she wasn’t bearing any weight on her legs.
“Within a week, they did an MRI and realized she had a brain abnormality,” Christy said. “We saw a geneticist, and it was shortly after her second birthday, we finally found out the genetic condition she had.”
Ellie was diagnosed with a severe CASK gene mutation.1
“She is immobile, she communicates just by little cues, nodding her head, looking at us,” Alan said. “She’s nonverbal.”
Our focus has been getting her into the therapies that will optimize her brain function,” Christy said. “Help her learn and absorb those things at a young age that will prepare her for a lifetime of happiness.”
To develop her communication skills, it was recommended that Ellie attend a month-long intensive neuromotor therapy program through Virginia Tech in Roanoke, Virginia.
The therapy, travel and lodging were quite expensive, so the family applied for a UnitedHealthcare Children’s Foundation (UHCCF) grant to help ease the financial burden and ensure Ellie would receive the care she needed.
“We are grateful for the money that we received, for sure,” Christy said. “It was helpful knowing that they saw how important it was for Ellie to attend and were able to give us that.”
The intensive therapy taught Ellie how to communicate with her eyes.
“It was essentially play therapy to keep it interesting for her,” Christy said. “Give her the choice of two toys, one on the right and one on the left, and ask Ellie to choose. Ellie would choose with her eyes.”
Ellie is now 6 years old and able to attend the same school as her sisters.
“At school she uses her eye gaze device2, a skill she learned at those intensive therapies,” Christy said. “She is able to identify numbers and shapes.”
As Ellie continues to grow and develop new skills, her parents say they’re so proud of how far she’s come and all the help they’ve received to get her there.
“We’re very thankful for the grant,” Alan said. “Without that intensive therapy, we might not be where we’re at with that communication. That was huge.”
Since 2005, UHCCF has awarded more than 34,000 grants valued at over $70 million. The funding pays for children’s medical expenses not covered, or not fully covered, by a commercial health insurance plan.
The foundation’s goal is to support families like Ellie’s so they can focus on what’s most important – improving their child’s quality of life. The grants help cover medical services and equipment like various therapies, counseling services, surgeries, prescriptions, wheelchairs and more.
Is your child eligible?
- Grant recipients must be 16 years old or younger at the time of application
- Must meet eligible income requirements
- Must be children under the care of a licensed medical professional with services rendered within the United States
- Primary coverage for a child must be by a commercial health plan, either through an employer or individually purchased. Secondary insurance through Medicaid or CHIP is permissible.
- Children do not need to be insured by UnitedHealthcare.
Do you know a family who could benefit from a children’s medical grant? The UnitedHealthcare Children’s Visit UHCCF.org for more information on how to apply.
