ST. LOUIS (KTVI) - A young girl could soon be cured of Sickle-Cell Disease, but her family faces a heart-wrenching dilemma.
Nine-year-old Madisyn Travis is fighting for her life every day. The genetic blood disorder causes her blood cells to change from a soft, donut-like shape to a brittle, sickle shape. Those cells often clog small blood vessels. The disease has destroyed her gall bladder and has often sent her to the hospital with frequent infections along with chronic and intense pain.
“When I’m hurting, I really won’t tell anybody at the time, because I want to see if it gets better,” she said. “But, when it won’t get better I guess I have to tell somebody.”
“I think Madisyn has a high threshold for pain,” said her mother, Denise. “So when she’s in tears and when she says she needs to go in, it’s time to go.”
But, Denise along with her husband James learned a bone-marrow transplant could cure their little girl.
“We thought you almost had to be on death’s door, if you will, in order to have a bone-marrow transplant,” said the mother.
Eight-year-old little sister Makariya is a match, but has the Sickle-Cell Trait. She is healthy. But, doctors said Madisyn may need extra blood transfusions after the transplant. The girls' brother has no trait and is also a match.
“So, I want to do this for him, because he’s really young. He’s only 2 years old,” Makaria said of little Preston Travis. “He’s really active. He likes to play around a lot. I just want to do this for him and my sister, because I love them very much.”
“I know that she… excuse me,” tears came to Denise’s eyes. “She would like to be the one to save her sister. So, making a decision is tough either way.”
Doctor Monica Hulbert is director of the Sickle-Cell Disease Program at St. Louis Children’s Hospital. She said giving bone marrow takes only a few hours. The procedure is done with the donor under general anesthesia.
“The child is usually in the hospital one night and goes home the next day,” she said.
Hulbert also said many families face the same tough decisions.
“We have patients that have leukemia or bone-marrow failure that need a bone-marrow transplant from a young sibling,” she added that there will be support for each member of the Travis family. “But, we have social workers that are associated with both the Sickle-Cell team and the bone-marrow transplant team. We also havepsychology. There are chaplains at the hospital as well.”
Hulbert said Madisyn has a 97% chance of being cured, before she suffers any strokes, another symptom of Sickle-Cell.
“But in the end, we know that she could be saved from this disease,” Denise said. “So, we are crying tears of joy for that, too.”
Madisyn said she wants to have her surgery during spring break. She said she did not want to miss too much of her 4th-grade year.
September is Sickle-Cell Awareness Month. You can learn more about the disease, and cure, at the Sickle Cell Stroll. It steps off Saturday, September 7, 2013 just east of St. Louis Children’s Hospital. Registration starts at 9:30 a.m. The walk begins at 10:30 a.m.