Sarah Ford | October 27, 2014
Treating Emma’s Rare Blood Disorder at The Children’s Inn at NIH
Van Khai 鈥淓mma鈥 Tran is no stranger to hospitals. Since she was seven-years-old in her home country of Vietnam, Emma has battled a rare blood disorder called Aplastic Anemia. In a country where getting a blood transfusion can be extremely difficult, Emma鈥檚 mother, Anh Nguyen, says it is a miracle her daughter made it out of the hospital.
In August, Emma and her parents arrived at the National Institutes of Health (NIH), hoping the National Heart, Lung and Blood Institute (NHLBI) would provide successful treatments for Emma鈥檚 illness. Within a year, Emma was able to receive a bone-marrow transplant. Her dad, Van Khoa Tran, was her donor. In July, doctors gave Emma and her parents some good news: Emma was well enough to move to The Inn鈥檚 Woodmont House, a transitional home for Inn families whose children are no longer in the acute phase of their illness and do not need to be as close to the NIH Clinical Center, but still aren鈥檛 cleared to go home.
Although Emma鈥檚 parents were thrilled with the prospect that Emma鈥檚 health was improving, they were nervous and hesitant to take Emma away, even a mile away from the hospital. 鈥淚 panicked,鈥 says Anh. 鈥淚t felt so good to hear that news,鈥 she says. 鈥淚t was like they took a big stone off my shoulders.鈥 But, she resisted moving at first. 鈥淚 was very scared.鈥
The move has proved to be a big boost to Emma鈥檚 spirits. Emma celebrated her 11th birthday at The Woodmont House with four other Inn families who share the home together. The families surprised Emma with a birthday party. They decorated cupcakes together and Anh, who loves to cook, made a special dinner with Emma鈥檚 favorite Vietnamese noodles. 鈥淚 prefer it here now,鈥 Anh says. Her extended family from Vietnam, including Emma鈥檚 cousins, was able to stay with them at Woodmont for several weeks this past summer.
Van Khoa travels back and forth between Vietnam and The Woodmont House when he can get the time off from work. The Inn鈥檚 Education Program Coordinator, Ronny Kempenich, visits The Woodmont House once a week to tutor Emma, helping her keep up with her schoolwork. Anh enjoys Mother鈥檚 Circle, a weekly chat with other moms in the house facilitated by Woodmont House Manager. 鈥淭here are many things I cannot share with Emma,鈥 Anh says. 鈥淪he鈥檚 still a kid.鈥 The Mother鈥檚 Circle gives her a chance to speak freely with other adults.
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