Salisbury girl battles rare bone marrow disorder

Ashlynn Truse, 7, has a lot of hobbies. She tells 47 ABC, she loves playing multiple sports.

“I like to play soccer and play softball and baseball.” She says.

However, Ashlynn gets tired along with headaches plus leg and arm aches.

Diamond black-fan anemia (“DBA”) prevents Ashlynn’s bone marrow from producing red blood cells. According to the DBA Foundation, there are roughly 30 new cases each year in the U.S. and Canada.

Since birth, Ashlynn has received a blood transfusion every three weeks amounting to 137 when we caught up with her on Monday.

Her mother Patricia Truse tells 47 ABC along with the blood transfusions comes excess iron in Ashlynn’s body, so her daughter must take daily medications to regulate it.

“It’s sad because it’s like she takes medicine and she’ll be like…I need my medicine. I’ll be like, why? She’ll be like, because I don’t want to die.” Explains Patricia. “It breaks my heart. It breaks my heart.”

Ashlynn is currently preparing to undergo a bone marrow transplant at Johns Hopkins in late April.

Patricia admits financially, Ashlynn’s condition has not put a major strain on the family up until now. This surgery will require staying within fifteen minutes of the hospital in Baltimore until Ashlynn is healthy enough to come home, which is why her family has launched a GoFundMe account.

“We’ll be in an apartment and we have to pay for the apartment up there, and we don’t know how long we’re going to be up there.” Says Patricia. “It’s just…like, it’s so unknown because we don’t know how long it’s going to take. It just really depends on how well she does with it.”

While it’s unclear how long Ashlynn may need to stay in Baltimore after surgery right now, she tells 47ABC she is confident in what she wants to be when she gets older.

“When I grow up, I would like to be a doctor.” She says.

Patricia says once Ashlynn completes the surgery, it will be very difficult for her to do any of her favorite activities for up to a year. Her family is hosting what they are calling a “day of celebration” for her on April 2 in Delmar.