Two Verona girls, who first became friends as neighbors, have since had their bond solidified under remarkable circumstances – sharing the same rare form of hearing loss.
Addie Hammes and Ellie Neuman are neighbors in the city, living just a few houses apart. Both girls’ families moved to Verona in 2017.
One of the girls, Hammes, was born with unilateral hearing loss. Neuman later developed the condition after an illness. Now, the two girls share more than friendship.
Both girls attend Core Knowledge Charter School, with Addie in third grade and Ellie in second grade.
Ellie was diagnosed with unilateral hearing loss in December 2018 after American Family Children’s Hospital doctors found a mass behind her ear bone, which caused nerve damage and ultimately left her without the ability to hear in that ear.
At first, doctors told the Neuman family that Ellie’s hearing loss wasn’t permanent; however, after follow-up MRIs, a specialist told them that Ellie’s hearing would not return.
Following Ellie’s diagnosis, her teachers began to use the Roger Focus microphone system, which works like an FM radio – sending her teachers’ voices directly into her good ear via a wireless receiver worn behind the ear. Addie had been the only user of the system previously.
Teachers can also remove the wireless microphone and pass it around to students to speak to Ellie and Addie.
The district owns the system, so the girls only use it while at school.
The girls are taking auditory processing training sessions to help train their brains to hear better in loud environments. This involves taking the wireless ear piece out for one subject, which will build up to taking it out for two subjects, slowly decreasing their dependence on the ear piece until they are not using it at all.
The deaf and hard-of-hearing counselor also taught the girls how to advocate for themselves in the classroom.
Some of that advocating involves speaking up when they need assistance, Jenny Hammes, Addie’s mother said.
“It can be scary to say ‘turn your mic on or off’ or say, ‘from where I am sitting, I can’t hear you,’ Jenny said. “Addie has learned if she isn’t comfortable, to take the teacher aside. We have taught her that if she doesn’t advocate for herself to get the things she needs, she can fall behind in school.”
It’s easier, though, as the girls now have each other to rely on with the condition – and the significance of their daughters’ friendship is not lost on their families.
It’s resulted in the two girls looking out for one another, Jenny said.
“Unilateral hearing loss is not super common,” Hammes said. “Someone you already played together with who at first did not have hearing loss, but now has the same condition as you, and is your best friend – it is a special little bond.”
Katie said that she’s “thankful” her daughter has a friend who deals with the same medical condition to help her through the transition.
“While Ellie’s story is different from Addie’s, it’s crazy how nice it is to have a friend just down the street with a similar situation,” Katie said.
Discovering something wrong
Being born with hearing loss, Hammes has known no other life than one with single-sided deafness.
While nine-year-old Hammes has never known a life without unilateral hearing loss, Neuman spent six years with full hearing before becoming impaired. This has required a great deal of adjustment.
“Because it’s not something you can see, Ellie has to remind people about her hearing loss, which is scary and embarrassing,” Katie Neuman said.
It wasn’t until a school field trip to the Madison Children’s Museum when Neuman’s mom, Katie, asked her to smile for a photo and noticed half of her daughter’s face was paralyzed.
Initially, Katie thought Ellie was just making a funny face, but Ellie insisted she was not feeling well.
From there, Katie said everything began to move quickly for the family, as Ellie spent two months visiting various doctors to diagnose the pain she was feeling in her left ear.
To the family’s disappointment, doctors couldn’t find anything wrong with her.
That later changed with a visit to an American Family Children’s Hospital doctor, who found the mass behind her ear, and a specialist who delivered the bad news about Ellie’s ability to hear in the future.
Katie said it has been hard on Ellie to deal with classmates following her diagnosis, who ask her questions about her hearing loss. The questions leave her feeling different from other kids, but Katie believes the questions are born out of genuine wonder and are not intended to be malicious.
“When kids play with her, there are misconceptions,” Katie said. “Ellie has had to learn how to navigate that without feeling bad about herself. She asks Addie, ‘What do you do or say if a friend doesn’t know about your hearing loss?’”
Adjusting to a new life
Apart from Addie’s help, teachers and staff at Core Knowledge Charter School have worked hard to help Ellie adjust.
When Ellie first returned to school after losing her hearing, her deaf and hard of hearing teacher and her audiologist accompanied her to the classroom to help her field questions from classmates and educate the kids about her condition.
Jenny says that because Addie is in-between not being fully deaf nor fully capable of hearing, a lot of people don’t consider her daughter to have a disability. She says unilateral hearing loss is sometimes regarded as a “silent disability.”
Ellie faces the same problem.
“My child is not ignoring you, she probably just isn’t hearing you,” Jenny recalls telling other adults who have attempted to get Addie’s attention.
As Ellie has had to adjust to unilateral hearing loss after living most of her life with full hearing, Addie has provided support. With Ellie’s hearing loss being in her left ear, and Addie’s hearing impairment being in her right ear, the girls like to say that when they are together, they have a “pair of ears.”
Jenny tells the girls that their hearing loss is, “just a part of you, but it doesn’t define you.”