Local Families Share Their Stories During Radiothon

Two Dallas families were given the chance to share their stories with listeners during this week’s annual Children’s Health Care of Atlanta and Aflac Cancer Center’s and Blood Disorders Services Care-a-Thon. Alethea Johnekins and her daughter, Sydney, and Courtney Lott and her daughter Emmy, all had the chance to tell listeners of their journey and also become advocates for the services given at the Aflac Cancer Center.

Both families said they were very impressed with the care given to them from the center and loved how Children’s Healthcare of Atlanta treated not only the children, but the parents as well. They simply could not think of a better place for their children to receive care. Johnekins said Children’s really respected the family and what they were going through.

“Illness in a child is a life-changing thing and affects everything in your life,” Johnekins said. “Children’s Healthcare treats you not only physically, but emotionally as well, and they take time with all of your kids and the whole family to make sure everyone is OK.”

Lott said she could not imagine what life would be like if she did not live in the Atlanta area and had access to the Aflac Cancer Center and Blood Disorder Services. She said that when they adopted Emmy at 3 weeks old, they had no clue that she had sickle-cell anemia or even what the disease was. Because of their interaction with CHOA and Aflac, they have been educated on the disease and the measures that have to be taken as far as treatment and care with Emmy.

Emmy was admitted to the hospital for the first time at 5 weeks old, and that was just the first admission of many to come for them. Emmy's hemoglobin lives only one-third as long as that of a healthy person. Due to the short lifespan of her red blood cells, Emmy has a difficult time fighting off infections, a harder time healing, experiences pain crises and extreme exhaustion. Emmy was given her first blood transfusion at 8 months of age because of the anemia.

“We have learned throughout the last 19 months that the information and knowledge about sickle-cell anemia is very limited,” Lott said. “We have learned that unless you are a person or family member dealing with sickle-cell anemia directly, you probably have not heard of it.” 

According to Johnekins, her daughter was diagnosed with a sarcoma tumor in her chest back in 2009 at the age of 6. Because of the tumor being in such an unusual area in her chest, she said it was a hard diagnosis to deal with and something they could not just operate on since it was between her heart and lungs. At that point, their doctors had to just come up with a plan to treat it without surgery, which involved radiation and chemotherapy for over a year. Sydney even received treatments at the Proton Therapy Institute in Florida in the spring of 2010.

Johnekins said it was a hard process to watch as a parent, but that Sydney stayed strong during her journey and understood that the journey and path she faced could be a long one. During her battle, she said Sydney never got down herself and faced everyday with a smile and optimism.

“Sydney is a very strong girl and had a lot of hope and faced it better than a lot of adults would,” Johnekins said. “She knew what she had to do and she knew she had cancer.”

Luckily, Sydney has been off her treatments since September of last year, but still has to get scans every three months to make sure that everything remains clear. Johnekins said she is doing well now and they both appreciate all of the support they have received from the community, their doctors and Children’s Healthcare of Atlanta. Even Sydney’s school and principal .

According to Lott, Emmy is still in a high-risk category for infections and is currently taking a drug that is used during chemotherapy treatments since she is more prone to infections. Lott said that Emmy, however, is doing well and looks perfectly healthy even when her hemoglobin levels are low.

Lott said that because of the great care and support they received at Children’s and with Aflac, they decided they wanted to do something to give back. They were inspired to start a nonprofit with all proceeds going to benefit the Aflac Cancer Center. Lott founded Emmy’s Got Style in March of this year, which through donations provides stylish and functional hospital gowns to chronically ill children.

“Emmy’s Got Style is both a way to keep the hospital stays for children, and the ones who love them, a bit brighter as well as to give back to those who do so much for these precious children,” Lott said.

If interested in following Sydney’s story or to donate, visit her page at www.caringbridge.org/visit/sydneyjohnekins. To learn more about Emmy and the Lotts’ nonprofit, visit www.emmysgotstyle.com.