Madison’s journey with Hemophagocytic Lymphohistiocytosis (HLH) began at 2 months old. A severe ear infection spiraled into Mastoiditis, leading to urgent surgery and a slew of testing. It was a challenging time for her mother, Jeannine, and their family. They grappled with the possibility of HLH, a blood and immune system disorder that had already touched their lives through Madison’s brother. Jeannine recounts, “Madison’s condition was weighing heavy on our minds that she could have HLH like her brother did.”
Having sought care for her son at Nemours Children’s Hospital, Delaware, Jeannine turned to the hospital once again, entrusting them with Madison’s care. “We have always felt the doctors and therapists have cared for and loved us truly from their heart,” says Jeannine. “We went to larger hospitals and felt like we were a number there, but not at Nemours.”
Madison’s treatment at Nemours Children’s primarily involves outpatient therapy services. The dedication of Nemours’ therapists is unparalleled, bringing a sense of trust and comfort to Madison and her family. “They have the best therapists ever,” says Jeannine. “They care and love for Madison as if she was their own.”
Looking ahead, Madison plans to continue working with Nemours’ outpatient therapy services as long as she can.
When asked about advice for others navigating similar journeys, Jeannine says, “Keep going to Nemours and never give up hope. When Madison started feeding therapy, we had given up hope of her eating by mouth. We went to see a surgeon about putting in a g-tube because we were sick of the NG tube. We have seen Dr. Katz for many years because of our son. He said to us that he felt we weren’t giving Madison a chance at eating, we just needed to give her more time. We decided to take his advice and started feeding therapy. It took a bit of time, but if it wasn’t for him and Speech Language Pathologist, Melissa Stone Mengistu, Madison would be in a very different situation today. Never give up hope, just give it time would be my advice.” Now, Madison is no longer using an NG tube, thanks to the work of her physical therapy, occupational therapy, and speech and language teams.
As Madison continues her journey at Nemours, her story serves as an inspiration to all. She reminds us that with hope and the right support, anything is possible.
