Meet Kid Captain Raelyn Miller-Ramirez
When Raelyn Miller-Ramirez and her family moved to Iowa from Oregon, they felt a little lost as Raelyn navigated the world without her sight. Thankfully, because of a family connection to Iowa, they found hope when they transferred her care to University of Iowa Health Care Stead Family Children’s Hospital.
Raelyn’s harrowing health care journey started two weeks before her sixth birthday, when she started to lose her balance. Over the next few weeks she would undergo major brain surgery, lose her eyesight, and relearn how to walk and talk again.
A life-changing answer
In the beginning, Raelyn’s parents, Chantel and Jordan, took their daughter to their local pediatrician several times, where she was treated for what was thought to be vertigo, before being seen for a back-to-school exam by an eye specialist, who detected swelling at the back of her eyes.
Further tests revealed an answer to Raelyn’s symptoms: a sizable tumor at the base of her cerebellum. Raelyn was later diagnosed with medulloblastoma grade IV, a cancerous, fast-growing central nervous system tumor that begins in the brain or spinal cord. Treatment included a seven-hour brain surgery at an Oregon children’s hospital.
“She came out of surgery and her eyes were kind of bouncing, but they said it would correct,” Chantel says, emotionally recalling what happened the second day after the operation as Raelyn recovered in her hospital room. “I got up to walk her to the bathroom and she said, ‘Mommy, why can’t I see anything?’ That’s when we found out she had lost her vision, as well.”
Surgeons there had removed the tumor, but Raelyn lost her eyesight, and she developed posterior fossa syndrome – neurological symptoms that can occur after surgery – and had to learn how to walk and talk again.
“She never really complained because we explained to her what was going on,” Chantel said. “We told her these are the things that have to be done to make you better. She’s amazing; she just took it like a champ because she wanted to be better.”
Months later, Raelyn rang the bell to indicate the end of her chemotherapy treatment. Throughout, Chantel and Jordan had discussed making the move to Iowa – Chantel’s home state – and transferring Raelyn’s care to Stead Family Children’s Hospital.
Thriving in Iowa
“I knew that Stead Family Children’s Hospital was the place we needed to be to continue treatment for Raelyn,” Chantel says. “Since we’ve been back here, Raelyn has done nothing but thrive. We walked into the hospital and as soon as we came in, they knew what Raelyn needed. It was refreshing. I didn’t have to explain to every single person that she can’t see.”
Raelyn is more comfortable going to appointments at Stead Family Children’s Hospital, Chantel says, and particularly likes the Child Life staff, as well as her care team.
“They come to a level to help her understand and comprehend what’s going on,” Chantel says. “They don’t treat Raelyn like she’s a baby; they talk to her like she’s a 9-year-old girl. They’re treating her as her own person.”
Raelyn regularly sees specialists at Stead Family Children’s Hospital and scans have shown no cancer for four years.
“You always question the things you do for your kids, but moving back here was the best choice we made,” Chantel says.
Now 10 and in fifth grade, the Davenport girl participates in Girl Scouts and enjoys drawing, singing, playing the violin, and spending time with her friends. Raelyn loved to ride her bike, so they bought a tandem bike so she could experience that feeling again. She is learning braille and uses a white cane to navigate.
Raelyn also organized a back-to-school supply drive, volunteers at food drives, lemonade stands, and other events, and would like to start a nonprofit to help families in need.
“She was born with the kindest heart in the world, and she wants to make the world a better place,” Chantel says. “She still sees the world as beautiful.”
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