Ashlyn Shell is just like any other three year old girl. She loves to sing, dance and play with her sisters. She also loves Disney movies - her favorite being Moana.
And it certainly shows because her door is covered with pictures of the Disney heroine. The toddler also has a doll she sings along with and holds close while watching the movie inside her room.
But Ashlyn’s room is not like that of most other 3-year-olds. It is full of wires and tubes and machines that monitor her and her blood. That's because Ashley 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, passed down to children by parents who both carry the trait. The chances of a child contracting sickle cell anemia, if both parents carry the trait, is one in four, accoring to Ashlyn's mom Kia Shell.
While the sickle-cell trait is most common in African-Americans, it can affect people of any race, and that's why Shell urges everyone to get tested.
“This day and time everyone should be tested to see if they carry the trait,” she said.
While most blood cells are round, flexible, and able to move freely throughout the body, sickle cell causes blood cells to form in the shape of crescent moons. The cells also become rigid, sticky and block blood and oxygen flow throughout the body.
The Shell family was living in Spartanburg, South Carolina when Ashlyn was born in May 2016. Since her birth, she's dealt with numerous health challenges, including initial issues with an abnormal body temperature, forcing medical hands to remove her from the delivery room and place her in a separate warmer room, Shell said.
One month later, Ashlyn was diagnosed with sickle cell anemia. At first she she received treatment at the Greenville Health System, but after learning about the better care options available at MUSC, the family uprooted to Ridgeville to be closer to the Charleston-based hospital.
Shell, a Cross native, said that MUSC is the leading hospital for treating sickle cell anemia and was shocked that the hospital had a center dedicated strictly to the disease.
“When I found out there was a sickle cell center, I was in awe,” she said.
According to Shell, it's difficult to see her daughter in pain - the disease causing it to often come in waves.
“One day she can be a normal three-year-old, and the next day she can be crying and screaming in pain,” Shell said.
Ashlyn's treatment at MUSC commenced in April. She's since faced two surgeries, chemotherapy and red-cell exchanges. Shell explained that the process was difficult for the close-knit family, always looking out for one another. It was physically and mentally draining because of little sleep and frequent traveling between Charleston and Ridgeville, about 30 minutes from MUSC.
Shell specifically spoke about the difficulty of watching Ashlyn'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. It's been especially hard on her two other daughters.
“The biggest thing is the girls, they are used to being around each other all day every day,” Shell said.
While Ashlyn's siblings don't have the disease, they are carriers of the trait, opening the door for one of them to be a possible bone marrow donor, according to Shell. After both siblings were tested, it was discovered the oldest daughter, Alayna, was a perfect match for a transplant for Ashlyn.
Shell said they approached Alayna about being a donor for her little sister and were unsure of what she might say. Shell explained to Alayna had what they called “magic marrow” that if she donated it to Ashlyn, it could make her feel better. After that conversation, Alayna didn't hesitate in desiring to help.
Explaining the bone marrow operation to Alayna, Shell said she likened it to a magic trick: Alayna 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 now. Transplant day took place May 15, and Shell revealed she was a bundle of nerves.
“When we got therem I was afraid,” she said.
But Shell praised Alayna and her composure, marveling at how prepared the 4-year-old was for the extensive surgery.
“She was very calm, and she didn’t cry,” Shell said.
After a successful surgery, Alayna was back to her normal self in just an hour - Shell laughing about how much her daughter, with a flair for all things dramatic, enjoyed the staff attention.
“She is our little drama queen,” Shell said.
The family is currently in a waiting season to see if the transplant worked and Ashlyn's sick cells accept the new, healthy marrow. If successful, Ashlyn will be cured of sickle cell complications.
For a period of 100 days after surgery, doctors will monitor Ashlyn; and the Shell family said they're eager for the wait to be over so they can hopefully celebrate a medical miracle.
“We’re gonna dance,” Shell said, referencing one of Ashlyn’s favorite activities.
According to Shell, the process has taught her much about her two oldest daughters, and children in general.
“Pay attention to your child during the process; there are so many lessons to be learned,” she said.
The mother of three has also learned valuable life lessons from her children - that they are resilient and able to persevere through some of life's toughest trials.
“Children are a lot stronger than we think they are,” Shell said.
But she couldn't reflect on the positive part of the last two months without praising the support of friends, family and hospital staff - all of whom Shell said have shown her it's OK to relinquish control sometimes. She explained she's relied greatly on others, who've either watched her other daughters and allowed the parents more time to stay at the hospital, or donated money for treatments.
"When people are willing to help, let them,” Shell said.
Ashlyn’s complete journey can be monitored through the family's Facebook page called Aspirations for Ashlyn.