Ashlyn Shell is just like any other three year old girl. She loves to sing, dance and play with her sisters.. She loves Disney movies and her favorite is Moana. It shows because her door is covered with pictures of the Disney heroine. She also has a doll that she sings along with and holds while watching the movie in her room.
Ashlyn’s room is not like that of any other three-year-old though. It is full of wires and tubes and machines that monitor her and her blood. Ashlyn has sickle cell anemia and is currently staying in the Children’s Hospital at the Medical University of South Carolina.
Sickle cell anemia is a form of anemia that is inherited. It is passed down by parents to their children when they both carry the trait. The chances of a child contracting sickle cell anemia if both parents carry the trait is 1 in 4. The sickle cell trait is most common in African-Americans, but can affect people of any race. Ashlyn’s mother, Kia Shell, said that she wants people to be tested regardless of their race because it can affect anyone.
“This day and time everyone should be tested to see if they carry the trait,” Shell said.
While most blood cells are round, flexible, and able to move freely throughout the body; sickle cell cause blood cells to be shaped like crescent moons and they become rigid and sticky and will block blood flow and oxygen flow throughout the body.
Ashlyn’s family was living in Spartanburg, South Carolina when she was born in May of 2016. There were problems from the beginning because when Ashlyn was born she had issues with her body temperature and had to be removed from the room.
“When she was born her body temperature was abnormal,” explained Shell. “She had to be taken to another room to be warmed.”
She was diagnosed with sickle cell anemia one month after she was born. From that point on she was treated by the Greenville Health System, but her family said that they were told the best treatment options were at MUSC.
Her family moved to Ridgeville, SC so that Ashlyn could receive treatment at MUSC. Her mother Kia Shell, from Cross, SC, said that MUSC is the leading hospital for treating sickle cell anemia and was shocked that the hospital had a center dedicated to sickle cell.
“When I found out there was a sickle cell center I was in awe,” said Shell.
Shell said that it is difficult for her to see her daughter in pain so often. She explained that with sickle cell anemia the pain often comes in waves.
“One day she can be a normal three year old and the next day she can be crying and screaming in pain,” explained Shell.
Shell said that they began the process of treating her daughter in April. The young child faced two surgeries, chemotherapy, and red-cell exchanges.
Shell said that the process was very hard on the family because they were a very close-knit group and always looked out for one another. It was physically and mentally draining because they often did not get sleep and were always having to drive back and forth from Ridgeville, SC to Charleston, SC.
She spoke about the difficulty of seeing her daughter’s body breakdown from the inside. Sickle cell anemia causes daily damage to organs, and Ashlyn was born without a functioning spleen which also weakens her immune system.
Shell said that it was especially hard on her two other daughters.
“The biggest thing is the girls, they are used to being around each other all day everyday,” said Shell.
Shell’s two other daughters are carriers of the trait, but do not have sickle cell anemia. Shell said that it was always a possibility that one of their daughters could be a match for a bone marrow transplant to possibly help Ashlyn, but she and her husband were unsure of what to do.
They tested both of their daughters to see if one could possibly be a donor in the future. The oldest daughter Alayna was a perfect match for a transplant. Shell said they approached their daughter about being a donor for her little sister and were unsure of what she might say. Shell explained to her that she had what they called, “Magic Marrow,” and that it could help her sister feel better if she gave some to her.
Shell then explained that her oldest daughter was eager to help her sister. Shell said that they explained to Alayna that the operation was like a magic trick she would go to the hospital, talk to the doctor, fall asleep, and when she woke up, the “Magic Marrow” would be gone and in her sister and making her feel better.
The day of the transplant was May 15th and Shell said that she was worried when she and Alayna first got to the hospital.
“When we got there I was afraid,” Shell said.
She praised her daughter and her composure saying that she was prepared to undergo surgery. She also said that the preparation for the surgery went exactly like the doctors and nurses had explained so it helped her daughter.
“She was very calm and she didn’t cry,” Shell said.
The transplant surgery was a success and Alayna was back to her normal self after about an hour. Her mother said that Alayna enjoyed the attention from the staff and said she always has a flair for the dramatic.
“She is our little drama queen,” Shell said.
Now the family will wait several days before finding out if the transplant worked. If successful, Ashlyn will be cured of sickle cell complications. The family must remain in the area for 100 days following the surgery so that Ashlyn can be monitored by the doctors at MUSC. She said that once that is over they want to have everyone back together again and them they will celebrate as a family.
“We’re gonna dance,” Shell said, referencing on of Ashlyn’s favorite activities.
Shell said that throughout the process she has learned a lot about both Ashlyn and Alayna, as well as children in general.
“Pay attention to your child during the process there are so many lessons to be learned,” Shell said.
Shell said that Ashlyn has taught her that children are strong and can persevere through tough trials.
“Children are a lot stronger than we think they are,” explained Shell.
Shell also said that they have relied a lot on others throughout this process. Whether it is family members watching their other daughters so the parents can be at the hospital, people donating money for treatments or hospital staff. Shell said that the process has taught her that people will help and it is important to let go sometimes.
"When people are willing to help let them,” said Shell.
Ashlyn’s journey can be monitored through the Facebook page her family has called Aspirations for Ashlyn.