Help a family with an epileptic child

Updated 6/7/2025

My name is Laura, and I’m the proud mother of a beautiful little girl named Lydia, born on February 21, 2023. Unfortunately, just a few weeks later, on March 30, our lives were forever changed when Lydia experienced her first seizure. Since then, our family has faced an incredibly challenging journey, with Lydia requiring extensive medical care and hospitalizations.

Lydia was admitted to the Children’s Hospital of Philadelphia (CHOP) from April 24, 2023, through September 19, 2024. She was transferred to an inpatient rehabilitation facility and made encouraging progress. However, the path has been anything but easy. Lydia’s epilepsy has proven resistant to treatment, and she had required intubation multiple times due to oxygen desaturation during seizures. She lost her ability to suck and swallow resulting in g-tube placement August 2023. We pursued various interventions for her seizures, including a ketamine infusion intended to stabilize her, but unfortunately, her condition remained severe.

After enduring three seizure-related cardiac arrests and further respiratory complications, we made the difficult decision to proceed with a tracheostomy on April 1, 2024, which her medical team agreed was the safest path forward to allow her to return home.

As of July 2023, Lydia had been on a 4:1 ketogenic formula to help manage her seizures. However, on April 17, 2024, she developed a life-threatening bowel obstruction requiring emergency surgery to remove part of her intestine and place an ostomy. She went into septic shock and experienced significant complications, including extreme swelling that caused her surgical incision to reopen, necessitating a wound vacuum. Surgeons believe the obstruction may have resulted from a combination of the ketogenic diet, post-operative narcotics, and limited mobility. As a result, the ketogenic diet was discontinued. She also experienced pancreatitis, believed to be caused by one of her seizure medications, which has since been discontinued. After this change, we began to notice promising improvements in her responsiveness. Thankfully, on August of 2024 the ostomy was able to be reversed but due to such a complex surgery she needs intervention for bowel movements.

Currently, Lydia’s seizure treatment includes three anti-epileptic medications, along with various others to support her gastrointestinal and respiratory health. Though she has made significant strides, she continues to require extensive medical care at home—including skilled nursing, physical and occupational therapy, safety monitoring, and specialized equipment to support her quality of life.

At just over 2 years old, Lydia is unable to meet typical developmental milestones. Her physicians do not expect her cognitive and physical development to progress far beyond infancy due to epileptic encephalopathy. She can lift her head (with some lag), roll to her side and occasionally onto her stomach, but cannot yet sit or walk due to hypotonia (low muscle tone). She frequently sucks on her hand, sometimes causing skin irritation. We are actively working on improving her eye coordination and purposeful movement, although delays are likely tied to a suspected genetic disorder. Despite these challenges, we remain committed to supporting her growth and abilities at her own pace.

Lydia has two older siblings, ages 10 and 4, whom we also care for. I took extended leave from work—beyond maternity leave—to manage Lydia’s care, and though I returned in June 2023, I remain part-time. Her father was laid off shortly before Lydia’s first birthday, and while he briefly found other employment, it ended abruptly. With the expiration of unemployment benefits and increasing financial pressure, we were forced to move from our apartment and live with family. While Lydia does have medicaid, everything is a battle to get covered and many expenses are still out of pocket.

Lydia is came home on January 13, 2025. Our goal is to provide her with the care she needs at home—not in long-term care. We use Aveanna home nursing and have a well amount of hours covered but it is not 24/7 which would be difficult to find anyway. They help with her busy medication and feed schedule, and help assist at her many appointments. We have had some set backs with minor hospital stays but overall we feel she is doing well. There have been discussions about long term use of her anti epileptics and we have a decisions to make if we would like to continue with another surgery to prevent liver damage. We are just enjoying finally having her home and will decide when we feel she is ready.

Any contributions would go toward medical expenses, daily living costs, travel to appointments, and care for our children. We are incredibly grateful for any support you can offer during this time. Thank you so much for your kindness.