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Trey Hofer, 8, seated on the lap of his mother, Jennifer Cowles, smiles at Santa Claus as Gretchen Schmidt, center, looks on Friday. Santa came a little early to visit Trey because the child may be undergoing heart surgery during the Christmas holiday. (American News Photo by John Davis / December 16, 2012) |
Trey Hofer can't stand on his own or speak a single word, but the 8-year-old can easily warm up a room with coos, squeals and hugs.
Trey was born with a Partial Trisomy 11 & 22 Syndrome, a rare chromosomal occurrence that resulted in physical and developmental disorders, said his mother, Jennifer Cowles.
Cowles said she, her sister and mother were all tested for the gene after Trey was born and were all diagnosed with it. After Trey was born, he was given eight months to live. Yet the 8-year-old boy has lived well beyond those expectations.
But he still has several developmental problems linked to the chromosome disorder, such as dislocated hips, deafness, eating issues and a lack of an immune system, his mother said.
Most recently, Trey's heart began failing, she said.
During an exam in September at Sanford in Aberdeen, doctors discovered the pulmonary valve in his heart was not working properly and needed replacement, his mother said.
Cowles said children with the syndrome often suffer from heart failure, but not until their teens.
Surgery was scheduled in Omaha, Neb., the week of Thanksgiving, and the two drove the six hours to the hospital. But complications arose again: During a test before surgery, doctors discovered his heart was beating too fast.
He was put on medication, and the waiting began to see if his heart would slow down. In late November, Cowles received a call and was told there was a spot on Trey's heart that was making his heart beat faster. If the spot is removed and his heart rate slows down, then his valve can be replaced, Cowles said.
On Monday, Trey and his mother will find out when the first surgery will be scheduled.
Michele Hengel, an occupational therapist with the Aberdeen School District who works with Trey, describes him as someone who lights up a room.
"A little boy with so many difficulties, but with so much to give," she said.
Hengel helped organize an early visit on Friday from Santa Claus in case Trey wasn't home for Christmas.
While Trey was initially frightened by the large man with a flowing beard, he was tugging at Santa's beard within minutes.
And there to witness it was Trey's mother and other family and friends, all snapping photos of him trying to get at Santa's beard.
While Trey and his mother wait for word on his surgery date, the two are spending time together in their home in Aberdeen, cuddling and watching lots of movies.
Despite his condition, Trey is still scooting around the room and clapping his hands. He was able to attend a special education program at Lincoln Elementary until he was diagnosed in September.
"When you work with special needs kids, it's kind of cool when they're really excited and respond to you," said Jan Schochenmaier, one of Trey's former teachers.
While Trey's mental development is equivalent to a 1-year-old, his expressions tell a different story, his mother said.
"He doesn't take anything for granted," his mother said. "He can't talk and stuff like that, but he just shows it by the expression he makes. It usually tells you everything."
In the more than four dozen framed photos of Trey in the family's apartment, the boy can be seen laughing, smiling, sleeping and living life like any other child his age.
"I wouldn't change it for the world," said Trey's mother. "It's the best job in the world to take care of him. He's a miracle child."
