At only 12 years old, Kelsey Farris already has endured periods of searing pain, endless rounds of medical tests and several lengthy stays at Children’s Hospital in New Orleans. But today, she's on her way to healing.
Kelsey, daughter of Ebony Farris and Bryan Clark of Marrero, was diagnosed with sickle cell disease as a newborn during a routine series of tests.
According to the National Institutes of Health’s website, normal red blood cells are disc-shaped and flexible so they can move through the blood vessels. But in sickle cell disease, the cells become the shape of a sickle due to a genetic mutation. The cells block the flow of blood to the body and that can lead to problems such as a stroke, infections and episodes of severe pain.
“Kelsey had her first of several pain crises at only 11 months old and was hospitalized at that time for two weeks,” her mother said. “After that, Kelsey was hospitalized for pain off and on for the next 11 years, receiving several blood transfusions as well.”
Kelsey present musician Jon Batiste, who visisted the hospital in December, with her painting of him wearing a tuxedo.
“I haven’t been able to do a lot of things like other kids, like running, because of the pain I have had,” Kelsey added. Her diet was also affected. “When I got older, I wasn’t able to eat my favorite fast food, Wendy’s chicken nuggets.”
A new beginning
In May 2023, Kelsey was placed on the NMDP donor registry, formerly known as the National Marrow Donor Program/Be the Match. Just one month later, a 27-year-old donor was found to be a perfect match. The transplant procedure was performed Nov. 7, 2023.
“I was so happy when I found out I had a donor since I have been dealing with this disease my whole life,” Kelsey said. “And although I was really nervous about the transplant, I feel amazing now.”
Dr. Zachary LeBlanc, a pediatric oncologist at Children’s Hospital, is one of Kelsey’s doctors.
“Often a sibling or another family member is a match, but that was not the case for Kelsey,” LeBlanc said “Fortunately, a donor was found and the donated cells were hand-delivered by one of NMDP’s couriers within 24 to 48 hours and brought to Children’s.
“Before the transplant, Kelsey was admitted to the hospital to begin chemotherapy for about a month to eradicate as many of the diseased cells as possible. During the procedure, the stem cells pass through a central line, similar to when someone donates blood. It usually takes about one to two hours to complete the transplant,” he said.
Kelsey will remain in isolation for six to nine months.
Keeping spirits high
“Whenever I saw Kelsey, she was always in a good mood, smiling and laughing,” LeBlanc said. “From the beginning, she always had a positive attitude, and Kelsey’s family is a great support to her.”
There was a major boost to her sprits while she was recovering. During Kelsey’s hospital stay, a special guest came to Children’s: Grammy winner Jon Batiste, was back home in New Orleans in December for the premiere of his Netflix documentary “American Symphony.”
An art and music lover herself, Kelsey learned of Batiste’s visit and quickly went to work on a painting of the Kenner native to give him when he came to her hospital room.
“The painting is a portrait of him in a tuxedo,” Kelsey said. “And when I gave it to him, he said ‘Wow, that’s an amazing piece.’ It was a once in a lifetime chance for me to meet him.”
Support through the process
Dr. Jeffery Auletta is senior vice president, health equity and chief scientific director at NMDP and said stem cell transplants can help with a variety of medical conditions.
“Blood stem cell transplants have successfully been used to treat or cure over 75 different blood cancers and nonmalignant diseases like sickle cell disease,” he said.
“NMDP supports patients before, during and after their transplant journey through the its Survivorship Program, which provides free information and resources to patients, families and caregivers. The program helps them take care of their physical, mental and emotional health and adjust to their new life post-transplant.”
Keeping up with life
A fifth-grade student at St. Martin’s Episcopal School in Metairie, Kelsey is tutored in math via Zoom calls and meets twice a week with the school’s learning specialist at her home.
“My biggest worry in all of this would be complications from the transplant,” Farris said. “So far, everything is going well. Kelsey has lab work every two weeks to check her blood levels, and this time, there are no sickle cells in her blood.
“Kelsey has the best attitude and has been so resilient. We are very blessed.”
As she continues her recovery, Kelsey has her sights set on a career as an artist.
“I pretty much love to paint anything, and I like using oils, pastels and acrylics,” Kelsey said. “I love music, too, so I do have options as to what I want to do in the future. But my dream is be an artist, to paint and to have people see my work.”