ElanaElana Loftspring was twelve when she decided to send care packages to children in need of comfort and care.  Now, after seventy packages and more than a year later, Elana has reached children from all over the world.

Elana first got the idea, when she received her own care package after undergoing brain surgery in July 2009 at St. Louis Children’s Hospital.  Elana has neurofibromatosis (NF), a genetic condition that can result in light brown skin spots, bone problems, learning disabilities, benign tumors, and cancer. 

When Elana was around two years old, doctors recognized light, “café au lait” spots on her skin as possible signs of NF. She received the official diagnosis at that time, but remained symptom-free until adolescence.

For kids with NF, it is vital to monitor the disease by conducting frequent MRIs to catch tumor growth at an early stage. When she was eleven, Elana’s doctors found a brain tumor.
Years spent learning about the disease still didn’t prepare the Loftspring family to hear that news. “It’s just a shock to see a tumor on your child’s brain,” says Elana’s mom, Sharon.

Elana’s doctors from Kansas City, Kansas immediately referred her to St. Louis Children’s Hospital to meet with pediatric neurologist Dr. David Gutmann. Dr. Gutmann is the co-director of the Neurofibromatosis Center at St. Louis Children’s Hospital, and the Donald O. Schnuck Family Professor of Neurology at Washington University School of Medicine.

“She came to us because she had a diagnosis of a brain tumor and we were going to help the family decide what to do next,” explained Dr. Gutmann. "The NF team kept close watch on the tumor for a year before determining it was time to remove it."

Elana had the surgery just five days before she turned thirteen. She was home from the hospital in time to celebrate her birthday on July 15th, 2009.

Soon after her birthday and surgery, Elana began formulating a plan to help kids like her.  She was preparing for her Bat Mitzvah, a Jewish rite of passage, which included completing a philanthropic project. Elana contacted “NFinc”, a group that focuses on outreach and research related to NF.

The organization allowed her to post a short message and email address on its website offer her help to others with the disease.

 To learn more about Elana and her care packages, visit www.nfnetwork.org, or click here for more information on neurofibromatosis.




Patient Stories