MONTGOMERY, Md., (WDVM)– Emi is a 13-year-old girl from Belize who has dock8 immune deficiency syndrome. Adopted at a young age by Katie and Jason Ballard EMI, she was able to get the medical help she needed.
“Our doctors in Dallas immediately said that the National Institute of Health is the place for us to be. There are less than 300 people in the world with this disease and the doctor who discovered that is here and they are on the cutting edge of research and cures,” said Katie Ballard Emi’s adoptive mom.
The Children’s Inn at the National Institute of Health is a nonprofit hospitality house that provides free lodging and a variety of support services to families and children with rare diseases like Emi.
“Emi is such a vivacious kid. She’s so great at making friends and building relationships and building repour with everyone here and so I think for them they build that community, especially if you’re here for a long time, it’s that support system, it’s who you talk to, who you see every day,” said Javin Smith, operations manager for Children’s Inn.
Doctors told Emi that her only chance to heal was through a stem cell transplant. But from a worldwide donor list, Emi couldn’t find a match. That is until…
“The National Institute of Health allowed us to reach out to her biological family, her mom was immediate yes. It was a long process but she ended up being a match and was able to be her donor,” said Katie.
Although Emi was fortunate enough to find her match, Katie says there is still a huge need for ethnic diversity in the stem cell registry.
“54% of Hispanic background people that are diagnosed with blood cancers or disorders like Emi’s that need a transplant won’t ever get there match, and the numbers are even higher for people of Asian and African American descent,” said Katie.
The Ballard family says they are thankful and blessed to have Emi here and healthy today.
“We have a healthy kid with a bright future ahead with quite the story to tell,” said Jason Ballard, Emi’s adoptive dad.