SSM Health Cardinal Glennon Children’s Hospital

Hailey's Story

When Hailey was 18 months old she developed a lazy eye. Hailey’s mom, Heather, took her to see the ophthalmologist, and he suspected she had Neurofibromatosis (NF). NF is a genetic disorder of the nervous system. It affects how nerve cells form and grow and can cause tumors to grow on nerves. There’s currently no cure for NF.

Hailey had a tumor behind her eye that was rapidly growing, causing her lazy eye. The ophthalmologist made an immediate referral to the NF clinic at SSM Health Cardinal Glennon.

Surgery was successful at making the tumor smaller. For the next several months, Hailey would follow up regularly at the NF clinic with monitoring and imaging to track the growth of her tumor. Hailey’s tumor grew, and she had a second surgery at age 4.

When Hailey was in 3rd grade, the tumor began pressing on her optic nerve. The tumor’s location posed greater surgical risk than with previous surgeries, so the team and the family discussed all of the alternate options available. A new chemotherapy option had become available that was not previously something offered to Hailey for treatment. The investigational drug, was not yet FDA approved, but was showing great promise in shrinking large tumors in children with NF. While there were many risks and benefits to be weighed, additional surgery posed further risk to Hailey losing her eyesight. The family chose to be part of the trial, start the oral chemotherapy and hope for the best. Hailey, now age 11, remains on the drug to this day, and it has since become FDA approved.

Hailey has frequent visits to the Costas Center and to the Dorothy and Larry Dallas Heart Center at Cardinal Glennon to monitor and manage unwanted effects as well as common side effects from the drug. Her visits include physical exams, bloodwork, and many other tests such as X-ray’s, MRI’s, EKG’s, echocardiograms, and more.

Family and friends know Hailey as a loving little sister, and a smart and sassy 5th grader. She loves golf, hockey, St. Louis Cardinals baseball games and her dog, Maverick. Her favorite TV show is Little House On The  Prairie. Her favorite foods are steak, corn on the cob, and McDonald’s. Hailey hopes to be a Kindergarten teacher when she grows up. Her favorite song is “Don’t Stop Believin’.

How CMN funds help Hailey and kids like her:

With your help, the Children’s Miracle Network has funded Child Life Services, renovations to the Costas Center, and the building/updating of the Dallas Heart Center. Hailey and her family are just one of the hundreds of families involved with these key areas of Cardinal Glennon Children’s Hospital.