Record-setting Bone Marrow Patient Amplifies Her Impact

A little girl’s journey to find a match for a bone marrow transplant inspired thousands to register as donors.

Bone Marrow Patient Amplifies Her Impact

Emilie, here with her mom Roxie, inspired thousands to register as potential bone marrow donors.

Published in Johns Hopkins All Children's Hospital - Fall 2018

With her big smile and adorable curly pig tails, you wouldn’t know that little Emilie has been through it all over the past two years.

“We are so grateful we are where we are right now,” says Emilie’s mom, Roxie. “She’s really strong. She’s a happy girl. She loves playing and learning.”

Since Emilie’s diagnosis of acute myeloid leukemia at 9 months old, she has had a long road of in-patient hospital stays, testing, bloodwork, chemotherapy and finally, a life-saving bone marrow transplant just over a year ago. The now 2-year-old is in remission and life is becoming somewhat “normal” again.

“We went in early September to go get a check-up from oncology, and everything looked good,” Roxie says. “Her blood is still 100 percent my husband’s, and it’s always come back being 100 percent my husband’s, which is good.”

The need for that bone marrow transplant is also how Emilie’s story turned viral–expanding the database by the thousands on Be The Match, the largest and most diverse donor registry in the world. Altogether, more than 10,000 people registered in hopes of helping little Emilie. Although she did not find a 100-percent match, her Dad, a 50-percent match, became her donor in a successful transplant. But the outpour of help and hope for Emilie is still having an effect.

“It’s still amazing that it was a year ago and people are still getting calls,” Roxie says.

Calls about being a match for other kids and people who are sick and need a donor, too. This includes Roxie’s cousin who is awaiting further testing and next steps. 

“Now she’s just kind of waiting to see when this child needs bone marrow so she can go on,” Roxie says. “Even though they tried to help Emilie, there is now the possibility of helping somebody else–and they’re willing to.”

You can help, too. From 11 a.m. to 1 p.m. on Thursday, Nov. 1, 2018, Johns Hopkins All Children’s Hospital is hosting an event to invite people to learn more about the importance of bone marrow donations and to become a member of the National Bone Marrow Donor Registry. It will take place in the lobby of Johns Hopkins All Children’s Hospital, 501 Sixth Ave. S. in St. Petersburg.

Roxie knows the importance of donors–and hopes they will have the opportunity to help someone else in need some day.

“I want to encourage people to become donors because you know there’s still so many children that need help. If somebody matches someone, it will help someone.”