It was the summer of 2006 when Laura Didier noticed that an eyelid on her daughter Ali’s right eye was drooping slightly. Laura took Ali to her regular doctor and an eye doctor. Both doctors dismissed her concern and reassured her that there was nothing to worry about.

By April of 2007, Laura noticed that the drooping had progressed and Ali’s eye seemed to protrude downward. A return visit to the eye doctor showed a definite difference from the previous visit, and Ali was scheduled for a CAT scan. The first results showed a mass behind Ali’s eye and a mass near her right ear. An MRI was ordered, and they waited for the results.

The doctor breezed in the office and put up the pictures from the MRI. “Okay, your daughter has Neurofibromatosis, type two,” he said.

“There was no preparation, no softened explanations, just wham, this is the diagnosis,” said Laura. “We sat there reeling.”  And then began to learn about NF2.

Learning about NF2 - Fast
They quickly learned that Ali had a tumor behind her right eye, tumors on both auditory nerves and several tumors on her spine. The next weeks were filled with medical appointments, gathering opinions, and learning more about NF2. They sought out the opinions of doctors in the Chicago area as well as across the country.

They learned that many people with NF2 become profoundly deaf when tumors grow on the auditory nerve. Armed with that information, Laura decided that the family would learn American Sign Language. They hired an interpreter to teach them in their home, and Laura’s husband Mark signed up for NF2 Crew, an online support group. 

“I couldn’t even read the posts there at first,” said Laura. “It was too hard for me to deal with it.”

Seeking Support
“Support is hard to find because NF2 is so rare,” said Laura. Laura and Mark drove to Michigan for a Neurofibromatosis Symposium, where a panel of adults with NF2 shared their stories with the parents.

“Even with all their trials and surgeries—their disabilities—I noticed that they had hope,” Laura reflected. “They talked about having to change their dreams and what they wanted to accomplish. That gave us hope.”

Difficult Choices
The day after Halloween, Ali suddenly lost some hearing in her right ear. The Didiers were faced with the decision of which tumor in which ear to operate on. The doctors’ opinions differed.

“The doctors gave us a 30 percent chance of saving her hearing in the left ear, and a very slim chance of saving it in the right ear,” Laura explained. “We chose to remove the one in her right ear and hope that they could use the slim possibility of saving her hearing. We also wanted to preserve the facial nerve while the tumor was small.”

The surgeon was able to remove several tumors, but was unable to save the hearing in Ali’s right ear.

Ali’s Attitude Trumps Her NF2
Throughout the whole process of learning how to deal with NF2 in her life, Ali has remained upbeat about her “disease,” as she calls it. For English class, she decided to share her story in an assignment about dealing with hardship.

“She forgot to give it a title,” said Laura. “I gave her some boring title suggestions—‘Ali’s Life with NF2’ or ‘Fighting NF2’.  Well, she thought about it for a split second and announced that she had the title—‘Diseasical!’”

Coming soon to a theatre near you.

Resources
NF2 Crew: Neurofibromatosis II Support
Support organization for those whose lives have been or are being affected by NF2.

Neurofibromatosis Type 2
From Stanford University, a consumer-friendly overview of NF2 including symptoms, causes, diagnosis, treatment, and complications.

Neurofibromatosis Type 2
From Cancer.Net, and approved by the American Society of Clinical Oncology, a more clinically-oriented but still very useful overview of NF2. Includes a good list of useful resources.