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SHAYLA GURALSKI
Two-year-old Shayla Guralski of Athens is like no other 2-year-old around .... literally.
Shayla, the daughter of Shawn and Angela of Athens, is the oldest known living child
battling with ETC Deficiency (the oldest before Shayla lived to be 11 months old).
Shayla was born on March 21, 2001 at Wausau Hospital. She was transported to Saint
Joseph’s Hospital in Marshfield on March 24 and spent two weeks in the Neonatal
Intensive Care Unit (NICU). After EEG’s, a spinal tap, numerous blood tests and
genetic testing, she came home on April 6 with no explanation for her need for
CPR and oxygen when she was born. On May 9, 2001, Shayla was rushed by ambulance
to Wausau Hospital. She was lethargic and unresponsive. Two days later,
she was flown to Saint Joseph’s Hospital and admitted to the Pediatric
Intensive Care Unit (PICU). She spent the next 209 days in the hospital.
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Shayla Guralski
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After months of tests, Shayla was finally diagnosed with Electron Transport Chain
Deficiency in Complex I. Complications include low muscle tone, low sugar levels,
growth hormone deficiency, thyroid deficiency, sub clinical seizure activity,
malabsorption in the stomach and some very subtle distinctive features.
She fought blood infections, had two surgeries to put in Hickman catheters, and
surgery to repair a blocked portion in her intestines just to list a few of the trials
she went through. "I went to the hospital every single day to spend time with Shayla,"
shares Angie, "even when she was on the ventilator and I couldn’t pick her up to hold her."
Carol Hein was one of several PICU nurses that took care of Shayla. "Her parents
were always very active in her care, and eager to learn," says Carol. "They learned
her respiratory treatments, medication and feeding regimens, her occupational and
physical therapy. They were willing to do anything to get her home."
And finally, Shayla did come home on December 5, 2001. Within the next few months
she would be in and out of the hospital many times. "It has not been an easy road
for Shayla," explains Angie. "But she continues to be a fighter and one of the
joys of our life. She made us realize what is important in life - every day
that we have with her and her big brother, Mason, is another day we thank God for."
She currently takes 15 mediations multiple times a day and is on oxygen constantly.
She gets therapy 2-3 times per week as she does not yet sit, stand or talk. "We spend
quite a fair share of the time at the Marshfield Clinic as Shayla has nine doctors and
follow-up visits are a must," says Angie. "But even though she has a very demanding
schedule, what is important is that we have her to enjoy each and every day.
I do know that we wouldn’t have Shayla with us today, if it weren’t for the caring
and diligence of the staff at Saint Joseph’s Hospital."
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