For Jozlyn Miller, what had for so long been forbidden was now a tantalizing possibility, glistening in the light just outside her window.
The Fredericksburg girl had seen it before, of course. She’d walked upon it in her booted feet. But she’d never played in it. When it snowed, it was Jozlyn’s mother, Trudy Miller, who would go outside and make snowballs. She’d bring them in and put them in the freezer for Jozlyn to handle inside.
Jozlyn was born with sickle-cell disease, a genetic condition that causes misshapen blood cells. The sticky, crescent-shaped cells can block blood flow, causing pain and sometimes severe complications, including organ failure. Cold exacerbates the condition, which is why Jozlyn was never allowed to play outside in the winter.
“Instead of going outside for recess, I would have to go to the library,” Jozlyn, now 13, told me. “I got invited to a lot of ice-skating-rink birthday parties. I couldn’t go because of the coldness.”
These were minor irritations compared with the pain that would frequently engulf Jozlyn and with her many visits to the hospital. Jozlyn was 3 when she learned how to work a morphine pump. She spent her fourth birthday on a respirator.
Many of us grew up at a time when there was no cure for sickle-cell disease. Then, in 1982, an interesting discovery was made. An 8-year-old girl who suffered from sickle cell developed leukemia. After a bone marrow transplant to cure the cancer, doctors discovered that the girl had been cured of sickle cell, too.
In 2010, doctors at Children’s National Medical Center told Jozlyn’s parents that a bone marrow match had been found for her. She started a two-week session of chemotherapy to wipe out her immune system in preparation for the new marrow.
Jozlyn’s donor matched nine out of 10 DNA markers, a number that gave doctors confidence. But Jozlyn suffered complications, including an infection and graft-versus-host disease as her body attacked the new cells. She spent six months in the hospital before she could go home.
In July, the Millers learned who had provided the bone marrow for Jozlyn: a woman named Petra Poker, who had registered her marrow in 2003 when a man in her small town in northwest Germany was diagnosed with cancer. In October, the mother of three traveled with her husband to Washington to meet Jozlyn, her mother and her father, Tejan Miller .
“I like to talk,” Trudy said, “but when I got around Petra I was really choked up, because I couldn’t voice the words to thank her. ‘Thank you’ just didn’t seem like enough for what she’s given Jozlyn, which is a chance at a better life.”
Jozlyn is now free from pain. She can go to sleepovers with friends. She’s a cheerleader for the Culpeper Cavaliers Little League baseball team.
And one day last winter, Jozlyn awoke to snow. She pulled on her jacket and her boots. Trudy was at her job as a regulatory inspector for the state of Virginia and it was Jozlyn’s grandmother, Pamela Morgan, who was in charge. As it dawned on her what Jozlyn was doing, Grandma dialed Trudy’s number to see if it was allowed. Could this once-fragile girl really face winter?
“By the time my grandmother got her on the phone, I was already outside,” Jozlyn said.
Jozlyn flopped down in the pillowy snow and swept her arms back and forth. For the first time in her life, she made a snow angel.
“I was like, ‘Ahh, it feels so good,’ ” she said.
Today, I kick off my annual fundraising campaign for Children’s National Medical Center. My goal is to raise $400,000 by Jan. 10 for the hospital’s uncompensated care fund.
Jozlyn’s family has insurance that covered her costly treatment. Not all families are as fortunate. You tax-deductible gift goes to pay the medical bills of underinsured families, helping ensure that no children are turned away because they are poor.
To make your donation, visit www.ChildrensNational.org/WashingtonPost or send a check (payable to “Children’s National”) to Washington Post Giving Campaign, c/o Children’s Hospital Foundation, 801 Roeder Rd., Suite 650, Silver Spring, MD 20910. Our deadline is Jan. 10.
Your gift today can make a difference in the life of a child.
David Jacobsohn is chief of the division of blood and marrow transplantation at Children’s Hospital and the doctor who oversaw Jozlyn’s treatment. More research is underway, he said. Next year, the hospital will start a trial testing the efficacy of haploidentical donors — that is, half-match donors. They’re also studying ways to reduce the likelihood of infection and graft-versus-host disease.
What must it be like, I asked, to be able to transform a child from sickness to health?
“It’s the reason I come to work every day,” David said.
For previous columns, visit washingtonpost.com/johnkelly.