Elsie Stangohr entered the world on August 15, 2023, as a bright-eyed miracle — a baby girl long prayed for, deeply cherished, and instantly adored. From the moment she was born, she became the center of her parents’ universe. For Sandy and Jimmy Stangohr, Elsie was not just their daughter; she was an answer to years of hope, faith, and longing..
In her earliest months, Elsie filled every room with joy. Her short life has been wrapped in love from family and friends who watched her grow, smile, and discover the world. But behind those smiles, a far more difficult journey was quietly beginning — one no parent ever imagines for their child.
When Elsie was just five months old, her parents began noticing signs that something wasn’t right. In August 2024, doctors confirmed their fears: Elsie was diagnosed with hydrocephalus, a condition that affects how cerebrospinal fluid flows through the brain. The diagnosis was terrifying, but it came with a plan. Elsie underwent brain surgery to have a programmable shunt placed — a procedure performed by a skilled neurosurgeon in the Chicagoland area.
The results were almost immediate.
After surgery, Elsie seemed like a new baby. She became happier, more alert. Her eyes lit up again. Her babbling returned. Her motor skills and engagement with the world began to improve. For Sandy and Jimmy, it felt like the light had broken through the darkness. They dared to breathe again.
But that sense of relief was short-lived.
Just one month after Elsie’s diagnosis and surgery, the family welcomed her little sister, Sofia, into the world. While celebrating new life, Sandy and Jimmy were simultaneously navigating hospital appointments, therapies, and the growing demands of Elsie’s care. Parenthood became a balancing act of newborn feedings and medical uncertainty, joy and fear living side by side.
By December 2024, new concerns began to surface. Subtle signs pointed to the possibility of an underlying genetic condition, and after discussions with their pediatrician and family, Sandy and Jimmy decided genetic testing was a necessary next step. Once again, they prepared themselves for answers they weren’t sure they were ready to hear.
In February 2025, while enrolled in her second intensive therapy program — an emotionally and financially demanding but invaluable resource — Elsie contracted influenza A. She managed to fight off the flu on her own, but soon after, her parents noticed something alarming. Elsie began to regress. Her mood changed. Her motor skills declined rapidly.
Trusting their instincts, Sandy and Jimmy rushed her to the emergency room in early March.
Following extensive brain and spinal MRIs and a lumbar puncture, doctors delivered another devastating diagnosis: Elsie had developed post-viral Guillain-Barré Syndrome (GBS), a rare condition in which the immune system attacks the nerves. The diagnosis brought fear unlike anything they had faced before. Recovery timelines for GBS can range from months to years, and outcomes vary widely.
Elsie was immediately started on IVIG, the standard first-line treatment. After five days, she responded well. There was cautious hope that the worst might be behind them.
But Elsie’s journey wasn’t finished.
On April 3, 2025, Sandy and Jimmy noticed worrying new symptoms — a complete loss of appetite and persistent vomiting. Once again, they returned to the hospital. More MRIs revealed a new and frightening finding: inflammation in the medulla region of Elsie’s brain, known as encephalitis. This explained the sudden setbacks they were witnessing.
Doctors determined this was not a separate condition, but a rare and serious variant of GBS called Bickerstaff Encephalitis. In addition, Elsie was experiencing metabolic acidosis, another complex medical issue still under investigation.
Today, Elsie remains hospitalized, receiving plasmapheresis — the next line of treatment for severe GBS cases. Her parents remain by her side, holding onto each other through a landscape of uncertainty filled with unanswered questions about her future.
There are still many unknowns.
Elsie will likely need long-term specialized therapies, multidisciplinary care, and ongoing treatments. Once genetic testing results return and her condition stabilizes, her parents hope to bring her to the Mayo Clinic to give her the best possible chance at a full, beautiful life.
Through it all, Sandy and Jimmy have remained unwavering — strong not because this journey is easy, but because their daughter needs them to be. Yet the emotional weight is immense, and the financial burden continues to grow with every hospital stay, therapy session, and treatment.
Elsie’s aunts, Jillian Ponzi and Bailey Appleton, have stepped forward to help carry that burden by organizing a fundraiser to support the family. Every contribution goes directly toward medical bills and care — helping Sandy and Jimmy focus on what matters most: being present for their daughters.
Despite everything, Elsie remains a symbol of resilience. Her life has been touched by pain far too early, but it is also surrounded by extraordinary love. She is still here. Still fighting. Still deeply cherished.
And in every moment — every breath, every small sign of progress — her family holds onto hope that this brave little girl has a future filled not with hospital walls, but with laughter, growth, and the life she deserves.