Grant helps family of young girl with rare disorder focus on what matters most
Lily’s story
Five-year-old Lily is as creative as they come. She loves to dance, make art and play make believe.
On the surface, Lily may seem like any other kid, but in her short life, she’s had to overcome a lot of sickness and health scares.
“Lily was born early,” said Emilia Spalding, Lily’s mom. “She was always a sick kid and when she got sick, she’d get really sick. We were always having to take her into the doctor.”
One year, Lily was in the hospital for extended stays five or six times, fighting off different illnesses. Her parents said respiratory illnesses hit her harder than most children, due to a rare RUNX1 gene mutation.
“Which is also known as a familial platelet disorder with myeloid malignancies, which just means she has a difference in her DNA that causes her bone marrow to work differently,” Emilia said.
Because of this diagnosis — which, through the process of genetic testing, the family discovered Lily’s dad Donny also has — doctors must monitor Lily closely, as she’s at higher risk for developing blood cancer and has a comprised immune system, which is why she gets sick so often.
Finding out this information was overwhelming for Lily’s parents, complied with a growing pile of medical bills for all her hospital stays. At one point, they felt like they were drowning in uncertainty.
That’s when the UnitedHealthcare’s Children’s Foundation stepped in. Lily’s family received a grant to help cover medical expenses, including those large hospital bills and for medical testing.
Since 2005, UHCCF has awarded more than 40,000 grants valued at over $80 million. The funding pays for children’s medical expenses not covered, or not fully covered, by a commercial health insurance plan.
“The relief of the financial burden helped us have a lot less anxiety and it gave us room to focus on her when she needed us to,” Emilia said.
Today, Lily is doing exceptionally well. Apart from some routine blood draws and bone marrow biopsies, you’d never know about her condition.
“We are well aware of what this disease is and what it can do and we’re going to stay on top of it,” said Donny Lappen, Lily’s dad.
Her parents and doctors continue to watch her closely – so Lily can focus on what she does best, simply being a kid.
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 is currently accepting applications. Visit UHCCF.org for more information on how to apply.
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