Scott G Winterton, Deseret News
SOUTH JORDAN — Eight years ago, Steve and Pamela Clark were blessed with quadruplets.
Since then, the Clarks have faced many health challenges with one of the four children, Stephan, and they're preparing for more.
Carter, Dillon, Abigail and Stephan were born 13 weeks early on Dec. 21, 2004. They ranged in weight from 1 pound, 12 ounces to 2 pounds, 4 ounces.
By February 2005, Stephan, who was actually the biggest baby, had suffered both lung and heart hemorrhages and undergone four surgeries.
Stephan has hydrocephalus, which is an excessive accumulation of fluid in the brain. He has cerebral palsy, which is a result of the brain hemorrhage, Pamela Clark said. He also has a seizure disorder from the hydrocephalus. He takes six medications every morning and seven at night.
The Clarks said they do not know how much longer the boy will live.
"We just can't believe we've had him as long as we have," Pamela Clark said. "We have been blessed with him in our lives, and there are so many things that we've learned by being his parents that we couldn't learn any other way."
Stephan was in the hospital for the first eight months of his life. He’s had a number of surgeries and was flown 12 times by Life Flight from Mount Carmel in Kane County to Salt Lake City.
Earlier this year, the Clarks moved to South Jordan to be closer to Primary Children's Hospital.
One of Stephan's biggest challenges is spinal fluid that requires a shunt to drain.
"They explained to us that they are running out of options because where he can accept the shunt is quite an exotic shunt placement and carries with it very high risk," Pamela Clark said.
Stephan's shunt is currently in his lung area, and the next time, it will need to be near his heart, she said.
Steve Clark said even though Stephan doesn't walk or talk, he is the center of their family.
"He's just like one of the others," he said. "He plays with them, he goes to school, they take him for walks."
He’s a little cowboy at heart, and his favorite song is “Home on the Range,” his parents said.
The third-grader claps his hands when he is happy and has a smile that lights up a room, the family wrote on Childrenandtheearth.com, a fundraising website to help the Clarks pay for Stephan's medical needs.
Stephan got the nickname "Bindy" from his brother, Carter, when they were just 2 years old and the name stuck. Now even teachers, neighbors and nurses call the boy Bindy.
“He and his brothers and sisters have a special bond. They love him very much,” the Clarks said on the website. “He loves to watch them doing age-appropriate activities that he is unable to do like reading, skateboarding, riding his bike and running. He has a hilarious sense of humor and loves to play with those who care for him.”
The Clarks met with the Make-A-Wish Foundation on Monday afternoon to look into having a potential final family vacation all together.
The family also is hosting The Bindy and Bullseye Family Fun Run, Walk or Roll 5K as a fundraiser from 2-7 p.m. Saturday. The name is a result of Bindy's favorite toy, Bullseye, the horse from "Toy Story."
It will be held at Riverfront East Park, 10991 S. Riverfront Parkway, and include food, dancing and fun for all ages.
The Clarks said they simply want to provide the fullest life for Stephan as long as he's here.
"We are doing some fundraisers so that I won't need to work during his time remaining with us,” Pamela Clark said.
Contributing: Viviane Vo-Duc
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