Support Elsie's journey

Elsie entered the world on August 15th, 2023 as a beautiful, mighty, and bright-eyed gift to the world and has been a source of joy in the lives of family & friends ever since. Most of all, Elsie was a blessing for her parents, Sandy and Jimmy Stangohr, whose lives were forever changed for the better the day she was born as they long had prayed for a baby girl. Elsie's short time in this world has been filled with so much love and joy, yet so much pain, as Elsie has had a series of health and developmental issues starting when she was only five months old.

In August of 2024, Elsie was diagnosed with hydrocephalus, a condition that impacts the way the ventricles of her brain manage her cerebrospinal fluid. Following this diagnosis, Elsie received immediate intervention and had a surgical procedure on her brain where a programmable shunt was placed into her brain by a fantastic Chicagoland neurosurgeon. Elsie, very shortly after this procedure, became a happier version of herself. She started to show signs of improvement, from speech to motor skills. Seeing Elsie's eyes light up, hearing her babbling so sweetly, and watching her take in the world around her as an alert and happy baby was all that Sandy and Jimmy hoped and prayed for - however a new medical issue would follow several months later.

At that same time, Sandy and Jimmy welcomed Elsie's little sister Sofia into the world a month after Elsie’s diagnosis and surgery. With the ongoing needs that Elsie was experiencing, and on top of caring for a newborn, Sandy and Jimmy demonstrated the strength of their partnership as they navigated through both highs and lows during an overwhelming time in life.

Around December of 2024, Sandy and Jimmy (alongside discussions with their pediatrician and family), decided that genetic testing would be an important next step in Elsie’s care as other signs started to point to the need for testing.

In February of 2025, Elsie caught influenza A while working on her second intensive therapy program, which has been an incredible but expensive resource for the family. After getting rid of the flu on her own, her parents started to notice a quick and unusual regression in her mood and motor skills. Her mom and dad acted quickly and brought her to the emergency room in early March. After full brain and spinal MRIs, and a lumbar puncture, they learned that Elsie acquired post-viral Guillain-Barre Syndrome (GBS). Her team of pediatric sub-specialists acted quickly with the new information and started IVIG, which is the typical line of treatment for this condition.

This diagnosis has been terrifying for Jim and Sandy, and for all who love Elsa dearly. It is a condition in which the immune system attacks the nerves and the timeline of recovery can take a minimum of two months, and up to two years or longer, depending on the response to treatment. Elsie responded well to five days of IVIG and everyone was relieved and hopeful that the worst had passed.

Most recently, on April 3rd 2025, Elsie was showing signs of concern to her parents (completely diminished appetite and vomiting), and yet again she was off to the hospital. Another round of full brain, spinal, and optic MRI imagining indicated a new finding in Elsa’s brain, something known as encephalitis (or inflammation/swelling) in the medulla region of her brain, which explained the unfavorable changes in Elsie. Additionally, Elsie was dealing with a form of metabolic acidosis, which still needs further explanation, although new lab work shows improvement in that area.

As of today and for the foreseeable (but hopefully shorter-term) future, Elsie is still currently hospitalized inpatient receiving plasmapheresis, the next line of treatment for GBS, as this new finding of encephalitis is a variant of GBS, called Bickerstaff Encephalitis.

Jim & Sandy continue to work together and stay strong, but this has been a devastating time for them as there are still many unknowns in their daughter’s future. Elsie will likely need specialized therapies for a long time, multidisciplinary care, and specialized treatments.

Once Elsie’s genetic results come back and after a confident recovery, the Stangohr’s hope to have the opportunity to bring their daughter to the Mayo clinic so that she can have the best prognosis for the beautiful life ahead of her.

On behalf of Sandy and Jimmy Stangohr, this Go-Fund-Me is being set up and managed by Elsie's aunts - Jillian Ponzi and Bailey Appleton - who like so many, care so deeply for Elsie. Now more than ever, the Stangohr’s are in need of financial support, and 100% of donations will go immediately to Sandy and Jimmy to manage the continually-rising medical bills. We are asking with gratitude for our friends, family and community to contribute any means that you are able to - whether $5, $50, or $500 - to help alleviate the financial burden that has come alongside Elsie's hospital stays and treatment.

We will continue to post updates here on Elsie's health as the Stangohr’s receive more information on her condition and diagnosis from genetic testing towards the end of April.