‘It was like a dream’ | Health Beat

Health & Wellbeing


When Basri and Mida Gashi met Ulrich Duffner, MD, in 2018, it marked the beginning of a promising new chapter in their daughter’s health journey.

And the end of an old chapter.

The family’s journey had begun in 2012, when they noticed a tiny red bump under the left eye of their daughter, Dalina, then just 2 months old.

“We thought it was a mosquito bite,” Basri said.

A few weeks later, the red bump remained. And when Basri and Mida took a closer look, they thought it looked a little strange.

“The red area didn’t seem to itch, but Dalina started crying through the night, as if she were having nightmares,” Basri said.

In their quest for answers, they would visit doctors in the U.S. and throughout the world.

Meanwhile, the red area under Dalina’s eye spread further. Red patches appeared around her mouth and cheeks.

By November 2012, her lips had puffed up and skin lesions appeared on her fingertips.

With roots in the Republic of Kosovo, the Gashis, of Wyoming, Michigan, decided to travel back to Kosovo, where they had family.

“I took a job as a truck driver, just so I could always be flexible with my schedule,” Basri said. “Whenever Dalina had an emergency, I could take off work and be there.”

“We tried to keep our hope strong, but it was difficult,” Mida said.

Doctors overseas tried various treatments.

“By then she had missed years of school,” Basri said. “She would get infusions, try a small dosage for two weeks, then increase it and increase it again. She had stopped growing.”

Through it all, the Gashis maintained hope that they’d find answers.

“All we had anymore was our faith in God,” Basri said.

Whole exome sequencing

When the Gashis returned to the U.S. in 2018, their search for care landed them close to home.

At Spectrum Health they met Dr. Duffner, section chief of the pediatric and blood and marrow transplant program at Spectrum Health Helen DeVos Children’s Hospital.

Dalina’s ailments were many.

“She had lesions and a rash over her body that were not healing,” Dr. Duffner said. “By now, her liver was inflamed, infections were causing abscesses in her muscles.

“She was developing a bowel disease and the steroid treatments she had been getting were causing side effects of weakness and poor growth.”

The doctor assembled a care team to work with Dalina and her family.

A pediatric rheumatologist at Spectrum Health recommended whole exome sequencing.

This genetic testing is one of the most extensive types available, capable of identifying key changes in genes.

“Whole exome sequencing is increasingly used to understand what might be causing symptoms or a disease,” Dr. Duffner said. “It’s a genomic technique that compares the genetic information of a patient with the expected result. If a difference, also called a mutation, is found, we can search whether this change has been described as causing a disease.”

And in Dalina’s case, the genetic test identified something very rare: a C1Q deficiency.

“C1Q is a protein made by our blood cells,” Dr. Duffner said. “It helps us to fight infections. It is also how our body rids itself of wastes. If it’s not working, we accumulate necrotic cells—and that can trigger autoimmune symptoms.”

The Gashi family, at long last, had some answers.

“We started looking at a bone marrow transplant, although it comes with risks,” Dr. Duffner said. “Our team researched medical literature from around the world about patients who had undergone this procedure, and we saw success.”

The Spectrum Health team connected with physicians in Sweden and England to learn more about their experiences with the bone marrow transplant procedure for a C1Q deficiency.

The team tried other treatments over the first year, to be sure this was the best option.

“Finally, the decision was up to the Gashi family, but we felt benefits outweighed risks,” Dr. Duffner said.

Doctors met with the family to discuss the options.

“We weren’t seeing any changes with the other treatments, so we agreed to go forward,” Basri said. “At that point, it was in God’s hands.”

The next step: Find a donor match.

No one in the Gashi family was a match for Dalina.

“There are about 29 million bone marrow donors worldwide,” Dr. Duffner said. “We searched a worldwide database.”

They found someone with a 90% match.

“Not perfect—but at 90%, very good,” Dr. Duffner said.

Gift of life

Bone marrow donors are the unsung heroes of our world, Basri said.

Receiving a donation is similar to a blood transfusion. For the person making the donation it is a procedure under anesthesia that requires a one-day hospital stay. Donors will experience some pain and fatigue that usually resolves within days.

Doctors admitted Dalina to Helen DeVos Children’s Hospital two weeks in advance of the procedure.

“Dalina needed to go through conditioning chemotherapy,” Dr. Duffner said. “The purpose of conditioning is to get rid of the patient’s own bone marrow in order to make space for the donor’s and to temporarily weaken her immune system so it that would accept the transplant.”

In May 2020, Dalina, then 8, received the bone marrow transplant.

“After the transfusion, it takes about 10 days to two weeks for new blood cells to show up,” Dr. Duffner said.

The Gashis watched and waited for a miracle.

And then it came.

Mida wept as she recalled the change in her daughter.

“It was like a dream,” Mida said. “I can’t explain it. All that time, we were focused on finding a cure.

“We never let Dalina see us weaken,” she said. “Now we saw her skin clear over the next days and weeks. We saw her hair grow back. She started to grow again.”

Her symptoms began to resolve.

“I find myself scared again sometimes, and then I look at her to remind myself—she’s OK,” Mida said.

Basri, too, marvels at the changes in Dalina.

“Even if I could give the doctors at Spectrum Health the world to thank them, it would not be enough,” Basri said. “Dalina and her brother, Andi, Mida and I—we are finally able to live like a normal family.”

Dalina, now 11, offers a shy smile amid conversations about her remarkable health journey.

“It feels good to do things,” Dalina said. “I love swimming and I love being able to put makeup on, and going to school.”





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