Help Mary Janus-Royce Manage Her Health and Family

Hello, my name is Jessica Janus, and I’m reaching out on behalf of my sister, Mary Janus-Royce, who is battling multiple chronic illnesses and cancer. Starting back in 2022, she was diagnosed with a rare blood cancer called Langerhans Cell Histiocytosis (LCH) and has been diagnosed with three separate neurological diseases and a disorder that caused both of her hands to be partially paralyzed. Most recently, in September of 2024, she was diagnosed with Dysautonomia, which is an umbrella of the following syndromes Mary is battling: Ehlers-Danlos Syndrome (EDS), Thoracic Outlet Syndrome (TOS), and Mast Cell Activation Syndrome (MCAS). Currently, Mary is getting used to losing over 90% of the feeling in her hands while also wearing braces on her hands. These conditions have left her not only struggling with her health but also trying to support her family during an incredibly challenging time.

Mary's Story:

Mary is a loving mother of two daughters and a supportive sister to me, her much younger sibling. Despite her own health battles, she remains the rock for her family, which has endured unimaginable loss over the past five years. Tragically, our father passed away unexpectedly in 2019, during my senior year of high school. Mary’s stepmother (my mother) had early-onset dementia during this time as well. Despite Mary’s grieving, she was the executor of our father's estate, supported me and my move to college, had power of attorney for my mom, and made sure she was getting the care she needed, all while trying to stay strong for her children. This has caused a tremendous amount of stress on Mary's body, affecting her health.

Due to her permanent paralysis in both hands, Mary has not been able to work as a special education teacher. There is no cure for Mary’s diagnosis; doctors have discussed that her options are pain management and/or further surgeries. Part of this being an inflammatory process has resulted in ulcers in her bladder, where she has a procedure every other week to calm down the bladder.

Over the last 15 years Mary has had 7 abdominal surgeries (not including her children). Most of her abdominal muscles were removed due a rare tumor. Her latest MRI, showed cysts and lesions on every organ including her bones and a liver tumor. Her team of neurologists at Rush and Mayoclinic have been diligently testing for a connection.

Many of the issues are not all covered by medical insurance. Mary has many costs between medical care, trips to the Mayo Clinic every six months, spending thousands of dollars on prescriptions, out-of-pocket testing, medical bills, and more. Every week, she has between 4-5 appointments for therapies or doctors. She will need customized equipment and explore alternative or holistic medicines to assist in her conditions and make her pain manageable.

What These Conditions Mean:

• Langerhans Cell Histiocytosis (LCH): A rare type of blood disease that is currently in the lining of Mary's lungs.

• Dysautonomia: A dysfunction of the autonomic nervous system, making it difficult to regulate heart rate, blood pressure, and digestion. Everyday tasks become challenging and exhausting.

• Ehlers-Danlos Syndrome (EDS): A connective tissue disorder that affects the joints, skin, and blood vessels, causing chronic pain, frequent joint weakness, and debilitating fatigue.

• Thoracic Outlet Syndrome (TOS): This condition compresses the nerves and blood vessels between the neck and shoulder, causing severe pain, numbness, and weakness. Mary experiences frequent numbness in her hands, which means she cannot grip everyday objects.

• Mast Cell Activation Syndrome (MCAS): A disorder that is triggered by stress, where the body’s mast cells are overly sensitive, making daily life unpredictable and limiting.

Your support would help cover:

• Specialized medical care and treatments not covered by insurance

• Medications and supplements to manage symptoms

• Braces custom to her hands to improve mobility

• Holistic medical options so she can explore other alternatives for relief

• Physical therapy and mobility aids to reduce pain and increase independence

Mary has been dealing with these issues privately in the hopes that this would not progress as quickly as it has, which has made the decision to ask for help challenging.

Your generosity, prayers, and support mean the world to Mary and her family. Thank you so much for taking the time to read Mary’s story and for any support you can offer.

-Jessica Janus and family