Kiya Thompson had spent years being careful about what she put online about her children.

Then the plan for her 5-year-old daughter, Noelle, fell apart.

With no perfect bone marrow match on the registry and a backup donor option suddenly on hold, the former ICU trauma nurse in Virginia made a choice she had resisted. She recorded a roughly 10-minute TikTok about the most private parts of her family’s life and asked strangers to listen.

“I knew it was a really long video,” Kiya told PEOPLE. “I didn’t know if they would watch it.”

They did.

Kiya, 45, and her husband, Justin, 44, have two children, Noelle and 2-year-old Lucca. Both have Chediak-Higashi syndrome, a rare genetic disorder that affects the immune system and can cause bleeding problems and neurological complications. Fewer than 500 people worldwide have been reported with the disease, Kiya told PEOPLE.

The Signs She Couldn’t Explain Away

Noelle had been born in December 2020 and appeared healthy. Around 9 months old, however, painful ulcers began forming on her tongue.

Then came illness after illness.

Kiya counted more than 12 viral infections a year. Noelle wasn’t in daycare and had spent much of the COVID-19 pandemic at home, so the frequency was hard for her mother to make sense of. Later, vision problems, easy bruising and bleeding gums joined the list.

Kiya’s nursing background made those changes harder to dismiss.

“I very much felt like all of my concerns were being dismissed as new mom syndrome,” she told PEOPLE.

One person finally told her to keep going. After looking at Noelle’s gums, her dentist said, “Something seems off. You should keep pushing for answers.”

That led Kiya to a hematologist and then genetic testing. Doctors found abnormalities in the LYST gene. Further testing showed that both parents carried a variant linked to Chediak-Higashi syndrome, confirming Noelle’s diagnosis.

Testing brought another result the family hadn’t expected: Lucca had inherited the disorder too.

A bone marrow transplant offered the only potentially curative treatment described in the family’s case, replacing the faulty immune system with healthy donor stem cells before the disease caused irreversible complications.

Now two children needed donors.

One Child Found a Match. The Other Didn’t

The disease didn’t look the same in the siblings.

Noelle was sick often. Lucca could go longer between illnesses, but when he became ill, the problems could be severe. Soon after Noelle’s diagnosis, he was hospitalized with hemophagocytic lymphohistiocytosis, or HLH, a serious inflammatory complication.

His inflammation markers rose above 25,000, Kiya said. Doctors needed them below 1,000 before they could safely move ahead with transplant.

The family searched the donor registry for both children.

For Noelle, no perfect match appeared.

Her father became the backup. Doctors considered using Justin as a half-matched donor, even though the option carried a higher risk of complications. Then abnormalities appeared in his bloodwork during the medical workup, and he was ruled out for the time being while he was referred to a hematologist.

For the first time, Kiya said, they had no solution in front of them.

“We’ve had a lot of blows,” she told PEOPLE. “But I feel like this has been the biggest blow of all.”

That was when privacy stopped feeling like the biggest concern.

Kiya had already shared Noelle’s story on Instagram and Facebook. TikTok was different. She put together the long video, explained what her children were facing and gave people a direct way to join the bone marrow registry.

She wasn’t sure strangers would stay for 10 minutes.

Nearly 700 People Answered

The response changed the way Kiya thought about the people on the other side of the screen.

Her video drew hundreds of thousands of views. Nearly 700 people joined the registry through her direct link, and NMDP, formerly the National Marrow Donor Program, reported a broader rise in traffic as people responded to the family’s story.

For Kiya, the result was larger than a number.

“Hope,” she said. “Just hope.”

Until her own children needed stem cell donors, Kiya said that even after 20 years as an ICU trauma nurse, she knew little about this kind of donation. The public response showed her how many others may be in the same position.

“There are a lot of good people out there who would swab their cheek in a moment’s notice,” she said. “They just don’t know they need to.”

The family still wants one of those new names to become Noelle’s match. But Kiya also wants the registrations sparked by her daughter’s story to help people they will never meet.

A Stranger Had Already Done It Once

There was a reason Kiya knew a stranger could change everything.

When doctors searched for Lucca, they had found a perfect match: a 25-year-old man in Spain who had never met the Thompson family.

Getting to the transplant took months. Lucca needed treatment to lower his inflammation markers. A strike at the collection center delayed the donation. Lucca developed pneumonia, and days before another planned hospital admission, he tested positive for adenovirus.

Each delay gave Kiya another reason to fear the donor might back out.

He stayed.

“We’re just so grateful that that man in Spain stood by us from afar,” Kiya said.

Lucca finally received the transplant last November. His new marrow engrafted quickly, and PEOPLE reported that aside from recurring adenovirus, his recovery went well.

Noelle is still waiting.

At home, she continues to sing, dance and make art. When a Disney princess visited the siblings, Noelle began singing “Let It Go,” and Lucca joined her.

Kiya doesn’t know whether her daughter’s perfect donor is already among the hundreds who signed up or whether that person has yet to enter the registry.

But she knows what happened when she finally told strangers they were needed.

“One thing I’ve learned, even in the depths of our own despair,” Kiya said, “is that there are really good humans out there who really care.”