HIGH POINT — Ten-year-old Adéja Johnson has a lot of questions.
Will my hair fall out?
What will the feeding tube feel like?
Will it hurt?
The final answers are coming soon. She is heading to Durham today to begin the process of receiving a stem-cell transplant aimed at ending her struggles with sickle cell disease.
She’ll go through chemotherapy, then the transplant of the stem cells.
If it works and all goes well, Adéja could be free of the disease that has been with her as long as she can remember.
For now, the Montlieu Elementary student has tough questions. The procedure isn’t easy. There can be painful sores and other complications involved.
“She’s wondering how bad that’s going to hurt,” said her mother, Bridgett Dawson. “We sat down and discussed with her that there will be some pain. For a few days and weeks, it’ll be pretty rough.”
There is risk. Some who undergo the procedure don’t survive.
But in this case, the seriousness of Adéja’s condition meant the transplant could be her only hope of a long and healthy life.
Diagnosed with the most destructive form of the disease, she’s been in and out of hospitals her whole life. The pain can be severe, akin to a bad episode of rheumatoid arthritis. Over time, things have gotten worse — her heart and one lung have been damaged.
“We really couldn’t say how far in her 20s she would live,” Dawson said.
But even as the disease has taken its toll, Adéja recently received good news.
With no siblings, there was no easy way to find a donor for a stem-cell transplant.
But a donor the family doesn’t even know stepped up to give Adéja a shot at becoming healthy.
“You can imagine me jumping around,” Dawson said.
The transplant offers hope, but it doesn’t come cheap.
Gladys Robinson, executive director of the Piedmont Health Services and Sickle Cell Agency, said the family has a significant financial need.
Adéja will be in the hospital for several weeks and must remain close during her recovery, meaning the family will need to rent a place in Durham.
Her stepfather also isn’t getting many hours at his job, Dawson said.
Robinson said she has gotten to know the family during their ordeal.
“This little girl is just a wonderful child,” she said.
The transplant marks a new step for the agency. This will be its first involvement with the use of umbilical cord cells from someone unrelated to the recipient, Robinson said.
Although Adéja will be at Duke Medical Center for much of the month, the actual transplant will take place May 27. With a weakened immune system, she’ll be vulnerable for long after the procedure.
But if all goes well, she’ll be healthier than she ever has been.
She’s thinking about the possibilities the future could bring. When it’s all done, she hopes to get a little dog.
Dawson is praying. And she has a message for all those helping them along the way.
“Just to tell everyone 'Thank you,’” she said.
Contact Jason Hardin at 373-7021 or at jason.hardin@news-record.com
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