Helping a young girl with rare disease become more independent
Nellie's story
To her family and the many people she meets, 5-year-old Nellie is considered a superhero, born with a special power.
“Her superpower is hugs. She loves to hug,” said Kristen Miller, Nellie’s mom. “We have heard from lots of people that that’s one of their favorite parts about Nellie, is her hug. She just leaves an impression on everyone.”
Nellie also brings a bit of sass that makes her even more endearing.
“She’s very spicy and she is very loving,” said Matt Barrick, Nellie’s dad. “She just likes to be all up on you.”
Born with the perfect amount of love and spice, Nellie was also born with a rare genetic mutation.
“Nellie has STAG1 mutation. It’s located on the third chromosome,” Kristen said. “There is probably less than 100 people in the world with her diagnosis. It really is hard to know because it’s so rare.”
Nellie’s parents didn’t get her official diagnosis until she was 3 years old, but just a few months after birth, Kristen and Matt noticed development delays, specifically in her speech and motor skills.
“Some of the signs that Nellie was unique would be she had low muscle tone,” Kristen said.
“She couldn’t roll over, she couldn’t sit up,” Matt added. “She was just behind.”
To help her live a more independent life, Nellie began speech and physical therapy, which her parents say has helped her thrive.
However, the costs of physical and speech therapy began to quickly add up for Nellie’s family.
“When you have a child with a disability, especially a rare disease,” Kristen said, “You almost are certain to max out your out-of-pocket maximum every single year.”
The family applied for a UnitedHealthcare Children’s Foundation (UHCCF) grant to help ease the financial burden and ensure there were no disruptions in Nellie’s care.
“The day that we received the email that we got the grant, I opened up my email and I cried because I could just feel that stress was going away,” Kristen said.
Nellie continues to improve her communication and motor skills through therapy and pushes towards more independence with each session.
“She is working on walking on uneven ground,” Kristen said. “She’s really excelling, and she is the hardest worker that we know.”
With that hard work, Kristen hopes her daughter will overcome any limitation in life.
“Ten years from now, she would be in high school, and I hope she has a supportive group of friends that embrace Nellie for who she is. I hope she is included in activities at school,” she said. “Just some independence for Nellie would be our biggest dream.”
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 Nellie’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 Foundation will begin accepting grant applications, starting Sept. 3. Visit UHCCF.org for more information on how to apply.
