Shawn-Lee went from happy, healthy, planning for all the upcoming holidays and living her life, to one day feeling “a little dizzy, tired and unsteady on her feet.”
In 8 short weeks, her mystery illness has left her unable to walk or use her hands, unable to speak, chew, or swallow without difficulty. Her doctor now wants to insert a feeding tube.
Shawn- Lee Midkiff, is 49 years old, a sign language interpreter by profession and the mother of three children and eight grandchildren to whom she is deeply devoted. Her husband Guy has not left her side since this nightmare started, and her sister Kris flew in from Florida and remains at the hospital each day from 6am in the morning until 7pm in the evenings.
Since being admitted to Honor Health in Phoenix two weeks ago, her medical team has been desperately looking for diagnostic answers to explain her rapid neurological decline.
Whatever the name of her mystery illness is, it has taken over her brain (MRI imaging shows lesions in the bilateral basal ganglia, ie. bilateral thalamichyperintensities) with the resulting neurological conditions of Dysarthria, Dysphagia, Myoclonic, and Ataxia. We are reaching out to medical specialists abroad, seeking input on her condition.
Shaw-Lee does not have medical insurance and is in dire financial need so that her family can start to pay mounting medical expenses ( ie., hospital, doctor, specialists, imaging and lab bills), as well as the cost of being able to secure a bed for her at a rehabilitation facility. At this time she must either stay in critical care at the hospital or move to a critical care unit in a rehab facility. She cannot return home due to her fragile state as she is unable to care for herself. Our next step is a rehab facility where she can work to regain lost motor skills.
As you can imagine, the medical bills are already flowing in. We are feeling like we are being held hostage by this mystery illness. As of today, her specialists are looking at neurological diseases within the rare disease subset.
A person would never choose to be in this situation, and now that she/we are, we realize that in trying to save her life, there is no room for “ego” or “pride.” It’s very hard to ask for help so please know we are doing so with the deepest sense of humility. Whatever you can contribute to help with her medical bills and/or a possible diagnosis will be felt to our core with gratitude.
With Love and on behalf of our dear Shawn-Lee,
- William Green
- Patricia Czarnik
- Suzan Williams
Organizer and beneficiary
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