On Tuesday, March 6th, 2018 my aunt, Annemarie “Amer” Santoro unexpectedly fell out of her wheelchair in her home, hitting her head as she fell. A widow of seventeen years, Amer lived alone, so when she fell, no one was there to help her recover from her fall. My dad, Amer’s younger brother of nineteen years (Mike) calls every night at 7pm for “prayer time”, but on Tuesdays, prayers are said in the morning because Mike has a weekly Tuesday evening meeting. Unable to reach the phone for help, Amer was forced to spend Tuesday night on the bathroom floor where she had fallen earlier that day. When my dad hadn’t heard from Amer by midmorning Wednesday he grew concerned and drove over to check up on her. It was at that time he discovered her lying on the bathroom floor where she had fallen. 

Fifteen minutes later, Amer was in the ambulance on her way to Rochester General Hospital, or so we thought. Several minutes after being loaded into the ambulance, Mike knocked on the back doors, concerned that a great deal of time had passed and the ambulance hadn’t left yet. The first responders opened the doors and told Mike that Amer had taken a turn for the worse and had gone unresponsive. The EMTs had to intubate her on the spot. The doctors later told us that this was a VERY rare procedure to administer in an ambulance. 


AMER’S FIGHT AGAINST A RARE STROKE:

Shortly after Amer was admitted to the hospital, the doctors at Rochester General performed a CT scan, the results of which were normal, even good if you could manage to find anything positive in this situation. But Amer was still unresponsive. Twenty four hours and several tests later, the staff in the Medical ICU (MICU) were still unsure as to why Amer wasn’t waking up. Fast forward a few more hours and an MRI revealed that Amer had had a very large stroke, one that neurologists at the hospital had never seen anyone recover from. The doctors told us there was nothing they could do.

We left the hospital that night in a cloud of disbelief. This couldn’t possibly be happening to our Amer. The prognosis could not be real. There must be something we could do. 

The next day we arrived at the hospital and Amer was just as we had left her the night before, hooked up to countless machines and being carefully monitored by the incredible staff in the MICU. During the shift change on our second night at the hospital, the evening nurse came in and introduced herself to Amer, asking if she could squeeze her hand, wiggle her toes, anything to elicit a response, but nothing. Giving it one last go, she performed a sternum rub. In that brief second, 

Amer’s eyes opened. “SHE IS IN THERE!” I screamed, “Oh my god, my Amer is in there!” I can’t thank the nurse enough for her willingness to keep trying to get Amer to wake up. In that moment our fight truly began. 

If anyone knows Amer, they know she is a fighter. Amer contracted the polio virus at age twenty one and was paralyzed from the neck down for a year. She slept on a board and wore braces over the entirety of her body for years, but she overcame the disease and went on to have a fulfilling career as an educator in the Rochester City School District for forty years before retiring as the Director of Elementary Education. After her retirement, Amer was also the Magnet School Planner in Rochester and was named Handicapped Person of the Year in New York State in 2005. At age sixty three, Amer had a heart attack and survived. At age seventy four, Amer was diagnosed with colon cancer and was given a minimal chance of recovery, but again she persevered. This is just another stage of her journey, but this time she needs our help.


NEXT STEPS:

Over the last seven weeks, Amer has made incredible progress. From that first night of opening her eyes for a split second, Amer is now able to keep her eyes open while her family and friends visit. She can respond through writing or mouthing words and she can move her right arm enough to almost be able to brush her own hair. In order to protect her airway, Amer had a tracheostomy after two weeks in the hospital; as a result of the stroke, the muscles on her left side (including those needed to breathe and swallow) were paralyzed. Amer is still on a ventilator, which requires 24/7 monitoring and she has needed several blood transfusions, but overall she has made an unprecedented recovery. At this point, the doctors at Rochester General have done all they can to help BRING AMER HOME, but she still has a long road ahead. 

Ever a pioneer, Amer is the first patient that her insurance company has approved to receive care at an out of state facility. On Monday, April 30th, Amer will be transferred to Select Specialty Hospital in Erie, PA (an almost three hour drive from Rochester), where the team is confident that they can improve her ability to breathe. The ultimate goal is to wean Amer completely from the ventilator and restore her lost mobility and mental function from the stroke. Although we aren’t sure how long Amer will need to remain at Select Specialty Hospital, we are hopeful that this team can BRING AMER HOME and restore as much of her independence as possible.