Help Tania Abigail Medina Fight NORSE FIRES

Dear Friends, Family, and Supporters,

We are reaching out to you today with a heavy heart and a hopeful spirit. Our beloved Abby is facing an unimaginable battle against a rare neurological disorder: NORSE (New-Onset Refractory Status Epilepticus) / FIRES (Febrile Infection-Related Epilepsy Syndrome). This condition has turned her life upside down, leaving our family grappling with uncertainty, fear, and overwhelming medical expenses.

NORSE and FIRES are not just medical terms; they are relentless adversaries, stealing moments of peace and replacing them with relentless seizures, cognitive decline, and physical challenges. Despite her remarkable resilience and the unwavering support of our family and loved ones, the financial burden of medical treatments, an ongoing hospital stay, therapies, and necessary equipment has become an unbearable weight.

For those who don't personally know Abby, she is 17 years old and is the oldest of 3 children. She is currently a senior at Mount Pleasant Christian School. She enjoys spending time with her sister, who is her best friend. They enjoy listening to worship and reading together in their spare time. Abby is an active server and an assistant media director at our home church, Cielos Abiertos Promesas de Dios (Open Heavens).

On January 19, 2024, during a media ministry meeting at church, Abby was not feeling well and began having seizures. Once paramedics arrived, Abby was taken to a local urgent care center where labs and exams were conducted. She was given seizure medications along with an IV and was discharged from the medical center and sent home.

The following morning Abby woke up, but was unresponsive. She was taken to Children’s Medical hospital that morning. Approximately one hour after being admitted, Abby began seizing non-stop. There was nothing medical staff could do to stop the seizures. She was given huge amounts of anti-seizure medications but these did not stop the seizures. Abby was intubated and moved to the Pediatric Intensive Care Unit (ICU) at Children’s.

Since the seizure activity was non-stop, medical staff decided that it was best to put Abby in a medically induced coma to protect her brain from damage and stop the seizures. Brain activity was being recorded with an electroencephalography (EEG), which are small sensors that were placed on Abby’s scalp to monitor electrical signals produced by her brain and detect seizure activity.

Abby was in a medically induced coma for six weeks, and during this time, the medical staff worked diligently to develop a treatment plan. Her medical team performed a lumbar puncture procedure on Abby’s spinal cord that revealed that her antibodies were attacking her immune system. To help her immune system, Abby had 7 treatments of PLEX every other day. PLEX is a procedure in which the blood in the body is removed with a device that separates the inflammatory factors like blood cells from the plasma in the blood. After the 7th PLEX treatment was completed, Abby was taken off the medically induced coma, but unfortunately after a couple of days she started seizing again. She was then placed back in a medically induced coma while her medical team again attempted to develop a new treatment plan.

During the following week is when Abby was diagnosed with Febrile Infection-Related Epilepsy Syndrome also known as FIRES. The neurology team decided that it was appropriate to slowly decrease the medication that was keeping her in a medically induced coma. Unfortunately, Abby began having seizures again and it was best to increase the medication again to keep her in the medically induced coma.

At this point, Abby had neurosurgery to place a Vagus Nerve Stimulation device (VNS) in her chest in hopes that it would control/stop the seizures. She was also placed in a Ketogenic diet delivered through a nasogastric tube. After almost 6 weeks of being in the ICU, Abby’s medical team once again slowly removed the medication that was keeping her in a medically induced coma and glory to God, she has not had any clinical seizures as of today (March 1st). Abby’s medical team has informed us that she has a very long road ahead of her that will require physical, occupational and speech therapy. Abby is currently still in the ICU and is expected to remain hospitalized for the foreseeable future. Her parents have remained by her side at the hospital since she was admitted on January 20th.

But in the midst of this darkness, there is a glimmer of hope, the power of community. We ask first and foremost for your prayers for Abby. Together, we can make a difference in Abby’s journey toward healing and recovery. If you’d like to help financially, you can donate below and we are so grateful for anything you can give. Your contribution can provide vital assistance in covering medical bills, purchasing essential medications, accessing specialized care/therapy, and easing the financial strain on our family. You can also help make a difference by reading and sharing Abby’s story.

Every donation is a beacon of hope, a gesture of solidarity, and a lifeline for Abby and our family as we navigate this challenging chapter in our lives. Your generosity will not only alleviate the financial burden but also offer strength, comfort, and reassurance during this tumultuous time.

We know that with God on our side, anything is possible. Philippians 4:13 says “I can do all things through Christ which strengthens me.”

Thank you for reading Abby’s story and thank you for your prayers, kindness, compassion, and support.

With heartfelt gratitude,

Abby’s Family.