In September she started high school and struggled with the change of schedule (having to leave the house at 6:30am instead of 9:00am, and acclimating to high school life and a new volleyball team. She began to feel run down and tired. At the end of September she came down with a sinus infection which quickly manifested into what seemed like a vicious virus. She told her parents that her eyes were blurry, and things took a downward turn quickly. After FIVE emergency room visits for vomiting and dehydration, one of the doctors realized that there was more going on here than a virus that wouldn’t go away. On October 15th she was admitted to the Children’s Hospital of the King’s Daughter, and things have quickly escalated to every parent’s nightmare.
She was diagnosed within a week with a VERY RARE neurological disorder; Autoimmune Autonomic Ganglionopathy, a condition for which only one hundred people a year are diagnosed with. She’s had plasma treatments, Immunoglobin Treatments, as well as many treatments to address the horrible symptoms which keep popping up as her immune system attacks her nervous system.
Tammie has taken a leave of absence to live at the hospital with her, and Mark is trying to hold down his practice, the house, the pets and spending every possible moment researching this condition and possible treatment options, and spending time with his baby.
Watching their baby suffer so horribly and endure test after test, procedure after procedure has been a complete nightmare for the both of them. Big Sister, Brianna, has quit her job and is coming home from college on the weekends to spend time with her sister in the hospital.
The doctors cannot give any definitive prognosis because this condition is so rare, and is very different for each patient. VERY few children have ever been diagnosed with this condition. The Soccios’ lives have been totally derailed and put on hold, and Tammie’s sick leave will be running out shortly. Several generous co-workers have generously donated sick leave so Tammie could still receive a paycheck, but VB Schools will only allow employees to receive twenty days. Kayla is facing weeks more in the hospital, and then months at home rehabilitating and recovering. They are also contemplating traveling to Texas to be seen by a doctor who specializes in this disorder – if and when Kayla is stable to travel. Should they decide to go that route, their current health insurance will not pay for any care given out of the state of Virginia. With all of the expenses that have occurred so far and the future expenses, please consider giving any amount that you can to help Kayla’s recovery and future be the best that it can be.
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