Fighting a life long battle

Times Reporter

 

She may look a little different, and talk a little different, but her strength and determination rival most.  Dee-Ann Wagner-Mercer was diagnosed with Neurofibromatosis 2, NF2, also known as Bilateral Acoustic NF, BAN, when she was 13-years-old.

“In high school I started to notice my hearing changing,” said Wagner-Mercer. 

“In 2001 things changed drastically, right after I got married.”

May is Neurofibromatosis Awareness Month, and the slogan for NF2 is ‘never give up’. Neurofibromatosis 1, NF1, occurs in one out of every 3,000 births.  Many people may have one or two small café-au-lait coloured spots, which is a characterization of NF1. Adults with six or more larger spots likely have neurofibromatosis. 

NF2 is more rare, occurring in one out of 25,000 births. Multiple tumors and lesions, mostly occurring on the cranial and spinal nerves, are NF2’s most common characterization. Hearing loss in the teenage years, or early twenties is generally the first symptom. After a friend of hers, who also has NF2, posted a video about her condition, helped give Wagner-Mercer the push she needed to speak out. 

“I’ve been meaning to for a long time. I’m really tired of the stares, and my daughter has recently been bullied at school because of how I look,” said Wagner-Mercer. 

“People are usually afraid of what they don’t know, so if I educate people then they won’t be so afraid of us.” 

Kayla-Ann was genetically tested when she was two-years-old. She is now six.  Kayla-Ann doesn’t have the same genetic characters, which Wagner-Mercer said was a very happy day for her. 

There is a 50/50 chance it could be passed on regardless of age, race, and sex. 

Wagner-Mercer said she finds residents of Strathmore fairly accepting of her. They may not know what’s wrong with her, but because it’s a small town many people know her, and know that she is deaf. 

“I want everybody to know why (I look like this) Lots of people judge by your appearance and they don’t realize they’re judging you, they have no idea,” said Wagner-Mercer.  

Removing the tumors can cause facial paralysis among other things. It can be quite risky for the patient. Some of the tumors are inoperable. Every six months Wagner-Mercer goes for a NF2 study at NIH national institute of health. She said she takes part in the study because doctors are trying to understand NF2 better. 

“It’s getting hard now that Kayla is in school, a little hard, time consuming,” said Wagner-Mercer. 

She said the study helps her keep her NF2 in check. She also said she thinks it’s very important to go for the studies because it may help doctors get closer to a cure, and it’s important to understand NF2 is what needs to be done.  

“When you go in to talk to doctors, you get the same thing. It’s like you’re supposed to treat me, and (yet) I need to educate (them),” said Wagner-Mercer.  

Janet Murdoch met Wagner-Mercer and her family almost four years ago.  Murdoch spends a lot of time with her friend. She taught herself how to do sign language through Dee-Ann. 

“If my daughter wasn’t here I don’t think I would be here today. I have no choice, I have to set an example for my daughter, and no matter how hard things are it can always get worse,” said Wagner-Mercer. 

“I just keep going because of my daughter.”