Azaryah
“At 5 months old, it became clear that my daughter Azaryah was not responding to sound and noise the way she had earlier. Our doctor referred us to one hearing center, which then referred us to Nemours.
Testing at Nemours gave a diagnosis of progressive hearing loss, with severe hearing loss in her right ear and profound loss in her left. For insurance reasons, we had to go through a trial period with hearing aids, which did not work well at all.
At 22 months, she got her first cochlear implant – but only for one ear, again due to insurance reasons. It took years of back-and-forth, with Nemours as our constant advocate, before Azaryah got her second implant at 9 years old.
With speech and language therapy, she is now a normal 11-year-old that does everything. She is a Girl Scout, does baton, was voted queen of her school and is very involved in the arts.
She has been to every Nemours cochlear implant summer program since they started. We both love the way the camps have grown and the direction they are going. I was told that this year Azaryah functioned like a ‘counselor' and role model to the younger kids. Nemours has been a champion for my daughter. I could not have asked for a better team or for her to be in a better place.”
— Arzra, Azaryah’s mom, Jacksonville, FL
Norah
Norah is 4 years old and sees a number of specialists at Nemours Children’s Specialty Care, Jacksonville. Our Associates are well acquainted with the vivacious young girl, who is often referred to as a “rock star” at Nemours.
Even with the best multiple-appointment scheduling, Norah and her mom, Megan, are at Nemours 30 times or more a year. “We love Nemours and are glad to be part of it,” says Megan. “But it would be nice if there were more places to sit, with different table heights so children with wheelchairs of all sizes could roll up to them easily. I often don’t think of using the café because it’s tucked away and difficult to get to. It’s the same with the library. There just seems to be a lot of space that could be better utilized. Also, an easier way to walk or sit outside would be fantastic.”
Riley
“In 2014, our son Riley, who is now 8 years old, began complaining of headaches. After multiple scans, tests and a biopsy, it was determined that Riley had a brain tumor.
We were referred to Dr. Eric Sandler at Nemours Children’s Specialty Care, Jacksonville. While it was overwhelming at first, we had Dr. Sandler, an assigned oncology nurse, a social worker and a Child Life specialist all providing us information and support.
What has been impressive and has helped us as a family is that Riley has been a part of all the Nemours meetings. During these meetings and during his treatments, Riley asks a lot of questions and is intrigued by the equipment and the processes. The doctors and nurses always take the time to explain everything to him.
When Riley suffered from neuropathy due to his treatments, Dr. Sandler found a regimen that was easier on him, and the nurses would call and ask how he was doing. The social worker found a program that has helped us quite a bit. As family and friends told us at the start of this journey, if your child has to be sick, you are in the right place.
We’ve always gotten what we needed, and Nemours has been there for us.”
— Scott R., Riley’s dad Jacksonville, Fla.
