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ST. LOUIS, MO (KTVI) – A small girl is fighting for her life against a genetic illness that causes brain tumors. But, the Neurofibromatosis Center at St. Louis Children’s Hospital is just one of a handful of institutions looking to an old drug for a new treatment.

Shannon Hennessey looks at a doctor’s exam table and sees her bouncing four-year-old girl Ally. She remembers her daughter telling her about headaches, when the child was just a toddler.

“When a two-year-old says that the back of their head hurts, it warranted us to know that something was wrong.”

But, Ally was already a tough little one who had survived birth with NF.

“Ally has neurofibromatosis, Type I,” explained Dr. Allison King. “About 10 to 15-percent of children with that diagnosis will have a tumor on their eye nerves.”

King is Ally’s oncologist at St. Louis Children’s Hospital. The girl now has an inoperable brain tumor that is stealing her eyesight. But just a few weeks ago, the little girl joined a brand-new study. Researchers hope the drug Everolimus will shrink these types of tumors.

“When they gave the medicine to the mice, they saw that the tumors got smaller,” Dr. King explained.

This pill has been used to help transplant patients avoid rejecting their organs.

“It’s given her a lot of freedom,” said Dr. King. “Compared to having to come to the clinic every week for I-V chemotherapy.”

That freedom is letting Ally plan a big weekend – her fifth birthday party. It started early with balloons and gifts from Children’s staff.

“She just graduated from pre-Kindergarten,” Shannon smiled. “She will be starting Kindergarten in the fall.”

Doctor Robert Hyashi, Children’s Director of Hemotology and Oncology, says researchers have high hopes for this old drug.

“We hope that that will not only more effectively treat these tumors,” he explained. “But also not expose other parts of the body to the side effects that typically occur with chemotherapy treatment.”

After almost two years on conventional chemo, it is too soon to know if Everolimus is meeting that goal for Ally.

“She takes it in stride,” Shannon said. “She gets nauseous from time-to-time, and tired, and sore but she doesn’t complain.”

And, Ally would not complain at doctor’s appointment. In fact, she told anyone who would listen about her birthday party at the American Girl doll store. She planned to name her new doll Hanna. Despite being almost legally blind in one eye, Ally had a lot to look forward to.

The Brain tumor Education And Therapy (BEAT) Support Group planned a resource fair and picnic for all families with children fighting brain and spinal tumors.

Saturday May 18, 2013

11 a.m. to 1 p.m.

Tower Grove Park (The Turkish Pavilion)

St. Louis, MO

To learn more about the Neurofibromatis Center at St. Louis Children’s Hospital, just visit

To learn more about BEAT, just go to

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