Turner Syndrome
The Struggles and Unexpected Blessings of Special-Needs Kids
“The Faith was the glue that held us together”
Elise and John Pascale of Santa Ana, California have five
children ages seven years to four months. Their third child, four-year-old
Sofia, was diagnosed with Turner Syndrome. Turner Syndrome is a chromosomal
abnormality affecting girls. Although each case is unique and symptoms vary,
some common manifestations are physical abnormalities, sterility,
susceptibility to a variety of health problems such as congestive heart
failure, and learning disabilities.
“I felt something was askew in the pregnancy,” recalled
Elise. “When she was born, there was something about her that looked different
than my other children.”
Sofia was initially given a clean bill of health, but a
nurse soon discovered that the baby had an irregular heartbeat. Once home, the
baby would cry hour after hour, was prone to sickness, and wasn’t eating.
“The first 10 months were hellish,” Elise said. “It was a
rough go.”
A cardiologist diagnosed Sofia with Turner Syndrome, and she
was admitted to the hospital. John and Elise already had one- and two-year-olds
at home, and it was a rough period in their marriage. John was working much of
the time, and then would go to the hospital to relieve Elise. Elise recalled
that she and her husband were like “two ships passing in the night.” Adding to the
stress, Elise discovered she was again pregnant.
Their Catholic faith was invaluable to them at the time. “I
don’t think we’d still be married without the Faith,” Elise said. “Having a
child that was constantly sick was hard on us. The Faith was the glue that held
us together.”
The couple also relied on the ongoing prayers of family and
friends. They received numerous letters of support, prepared meals, and money
to help with the bills. “People knew we were a young Catholic family and
reached out to us,” Elise said. “Their prayers got us through the worst of it,
and they continue to pray for us daily.”
Despite the challenges, the couple is grateful for Sofia.
She’s a joyful child, Elise said—when she enters a room, “it’s like a light
bulb turning on.”
“She makes us laugh and is caring and loving,” said Elise.
“When we’re having a hard time, she laughs, and everything is fine. She’s
really a gift from God.”
At the moment, the future is uncertain for Sofia. She could
live a long, healthy life with few health problems, or die young of congestive
heart failure. When Sofia is seven, her parents will have to decide whether or
not to give her growth hormones. The philosophy of parents with Turner
Syndrome, Elise said, is, “Take it one day at a time.”
“God gives us what he knows we can handle,” Elise said. “If
we rely on him, there aren’t any challenges we can’t meet.”
Catholic World Review
Jim Graves
Oct 2012