Jayla’s story began in March 2023, around six months to a year before her diagnosis. Initially, Jayla complained about things like earaches, headaches, blurry vision, and constant pain. Her grades started to suffer due to her loss of vision and persistent symptoms. I took her back and forth to the emergency room and Urgent Care, and they kept dismissing her with just headaches and perhaps sinus issues. I knew something was wrong. So, I kept pushing, but I continued to get pushback whenever I suggested a CT scan of her head.
One night, I took her to the emergency room, and the doctor finally asked, “Mom, what would you want us to do?” I said, “Jayla is complaining that she cannot see. Can you run a CT scan?” They finally did the CT scan but didn’t see anything. The doctor suggested that Jayla follow up with her primary care doctor for a referral to an ophthalmologist. Her doctor put in the referral, where we were seen by pediatric ophthalmologist Dr. Sarah Logan at Nemours Children’s Health in Jacksonville. Dr. Logan suggested that Jayla get an MRI. On March 1, 2023, we received a phone call that would forever change Jayla’s future endeavors and dreams. Shortly after receiving the diagnosis of Multiple Sclerosis (MS) – Optic Neuritis from her Ophthalmologist, Jayla was admitted to Wolfson Children’s Hospital in Jacksonville to begin treatment with a team of Nemours doctors. To stop the progression of MS in Jayla’s eyes, she was in the hospital for seven long, emotional, and stressful days. This is where we met Dr. Loren McLendon, a great neurologist who listened to all of Jayla’s concerns. We are amazed at her ophthalmologist, Dr. Logan, and the outside support doctors she would be with throughout her diagnosis. Some of her medical team also included Advance Practice Registered Nurse Tawnee Ebreo and Orthopedic Physician Assistant Lukas Hayden. At first, I could not understand why MY child was going through this. I didn’t understand, but I knew my daughter was strong, and we were her support; she knew the days ahead would be hard and challenging.
Jayla’s path to managing her Multiple Sclerosis has been filled with semi-annual infusions, MRIs, and bloodwork. Jayla had to undergo a neural spinal tap to examine the fluid and assess the progression of her MS, which are crucial steps in preventing the worsening of inflammation and symptoms. Additionally, Jayla has another autoimmune disorder, arthritis, which is currently undergoing evaluation outside of her MS. Despite the challenges, Jayla is navigating through her MS and therapy. However, she remains sad about the long-term implications for her life, including her ability to function independently.
Jayla shares, “I’m hopeful that everything will improve, and I can go to college and have a great future.” Despite her diagnosis, Jayla is motivated to become a biomedical engineer. She encourages her three siblings to work hard for their dreams and goals despite any obstacles that may stand in their way.
Jayla’s goal is to keep her MS at bay for as long as she can and continue what she needs to keep any new lesions from forming. She has started to garden and play the piano to comfort her in her diagnosis. Advice Jayla has for another patient going through something similar is: “I would tell them to stay encouraged and don’t get down about your diagnosis. Keep pushing through and always look for the light at the end of the tunnel; even if you don’t see it, never give up trying to find it.”
