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‘Ding’ makes a little girl’s dream come true

By Staff | Jul 5, 2017

Altinay Kuchukeeva, Amir Ruslan, Ruslan Monolbaev and Ayana arrive at J.N. “Ding” Darling National Wildlife Refuge for a day full of fun activities. ASHLEY GOODMAN

J.N. “Ding” Darling National Wildlife Refuge granted one little girl’s wish by naming her “Ranger for the Day” Friday, June 23. Ayana Ruslan, who was a recipient of the Make A Wish Foundation, arrived at “Ding” with her family early Friday morning to participate in an array of activities.

This is the first time that the refuge has participated with the Make A Wish Foundation.

“This was one of the highlights of my career,” Supervisory Refuge Ranger Toni Westland said.

During her time at the refuge, Ayana and her family took a private bus tour of Wildlife Drive where they saw ibises, reddish egrets, manatees and a yellow-crowned night heron. The family also watched a video about the refuge, made a craft, had lunch courtesy of George & Wendy’s Seafood Grille and took a boat tour via Tarpon Bay Explorers.

The “Ding” Darling Nature Store also provided Ayana and her younger brother Amir with goodie bags stuffed with hats, T-shirts, slippers, books, stickers, patches, stuffed animals and sunscreen.

Ruslan came to Sanibel from Washington, D.C. with her father Ruslan Monolbaev, Altinay Kuchukeeva, her mother and Amir Ruslan, her younger brother. Ayana was diagnosed with Ewings sarcoma in June 2014. Her father said Ayana was diagnosed right after she turned 4.

“She started experiencing discomfort in her left hip very close to her fourth birthday. At the time, she was going to dance classes so we thought maybe she fell. So, we took her to the doctor and they took x-rays and they thought it could have been a fracture. The pain started getting worse so we went back the doctor’s again and they suspected something. There was a visible lump on her hip. They ran an MRI which is more comprehensive than an x-ray. They detected that it was a tumor so they immediately took her under observation. They did a biopsy to determine what kind of cancer it is. The test, which took about two days, came back with Ewings sarcoma,” Monolbaev said.

Monolbaev said that Ewings sarcoma generally affects children in their shoulders, elbows, knees and hips. All of Ayana’s treatment is done at the MedStar Georgetown University Hospital in Washington, D.C.

Following her diagnosis, Ayana underwent 10 sessions of chemotherapy in six months in hopes of removing the cancer.

“They had to remove the bone. They took out about 80 percent of her left femur,” Monolbaev said. “They put in a metal prosthesis. She has a long scar alongside her left leg.”

After her surgery, Ayana received post-operational chemotherapy for six months. After her second round of chemo, the doctors took another biopsy to see if the cancer went away.

“It was confirmed that the cancer treatment is effective. Once they did that, they declared that she was cancer-free at that time but they will keep her under close watch for the next five years,” Monolbaev said.

To make sure she is in the clear, Ayana gives blood every six months and does an MRI scan. Despite the diagnosis being tough on the family, her parents have tried to keep life as normal as possible for her. While she was undergoing treatment, she still continued her studies while she was at the hospital.

“They have someone on staff who helps them continue with learning. I think that was very helpful in terms of keeping her engaged socially,” Monolbaev said.

In addition to her chemotherapy, Ayana also received physical therapy to regain strength in her left leg after the operation.

“She was in a wheelchair for about nine months. The physical therapy lasted for two years,” Monolbaev said. “We’re still trying to get more physical therapy for her but it depends on if there are any therapists available and what the insurance allows.”

Ayana’s inevitable trip to Sanibel began unfolding after her surgery three years ago. While she was in the hospital, she was visited by Make A Wish volunteers. Unlike the majority of children who want to go Disney World or go on a shopping spree, Ayana had two things on her mind: the beach and wildlife. With those two cues, Make A Wish put together the trip to Sanibel and J.N. “Ding” Darling National Wildlife Refuge for Ayana’s family.

Her father’s highlight of the trip was just letting Ayana be a kid.

“We’ve met so many great people who are very helpful. We’re just basking in the warmth. It’s more than just being able to take part in Ayana’s wish, it’s meeting these people and sharing our story and hoping for the best,” Monolbaev said.