GRAND RAPIDS, Mich. (WOOD) — To see 2-year-old Mistha Jackson, you’d never know what she’s been through.
“We’ll look at pictures and it’s like, ‘Oh my gosh, we were there.’ But when we were there. It was everything. It consumed us. That’s all we knew,” Mistha’s mother Widline Jackson said.
Parenthood hit her and her husband Julius Jackson hard. Within just a few weeks of Mistha’s birth, the little girl became very sick.
“When we found out she was sick, my parents came, her parents came and we prayed. Whatever happens, God’s in control. I’m just going to do my best to do what I can do,” Julius Jackson said.
While doctors worked to figure out why their baby was so sick, the Jacksons had to give up their apartment and move in with their pastor.
Then doctors gave them a diagnosis: What had presented like leukemia turned out to be a rare disease called hemophagocytic lymphohistiocytosis, or HLH.
“We didn’t know what it was. We’d never heard of it,” Widline Jackson said.
“It’s quite a rare disease. It affects 1 in 100,000 children,” said Dr. Ulrich Duffner, who specializes in pediatric blood and marrow transplants at Helen DeVos Children’s Hospital in Grand Rapids.
He explained that HLH affects the immune system.
“It just goes into overdrive and patients get more and more fever and become more and more sick,” Duffner said.
Treatment required chemotherapy, which left Mistha lethargic and, according to her mother, lifeless.
Doctors at the children’s hospital reached out to a Swiss drugmaker and convinced it to donate an experimental drug designed to treat HLH. It worked.
“(The drug) gave me my daughter back, the one I remember giving birth to,” Widline Jackson said.
The next step in Mistha’s treatment was a bone marrow transplant. That presented another challenge. Widline Jackson is Haitian and Julius Jackson African-American.
“Finding a donor that’s Haitian and African-American that matched her was really tough,” Widline Jackson said.
Doctors decided to go with the next best thing: her mom’s bone marrow. With only a 50 percent match, the bone marrow transplant worked and Mistha was on the mend.
The Jacksons and Duffner say that getting more people on the bone marrow registry would help other patients find a donor more easily. There are 27 million people registered. The more people who are willing to donate, the more lives that can be saved.