AMERICANS: Team shows young fan the ropes

Tri-City HeraldJanuary 26, 2013 

Evan Pratt doesn’t think he is any different than any other kid his age.

The second-grader at Columbia Elementary School in Burbank plays AAU basketball, keeps up with his school work, has tons of friends and gets into his share of mischief.

What sets Evan, 8, apart from his friends is that he has cystic fibrosis. He never uses his condition as a crutch, but it is serious enough that organizations such as the Wishing Star Foundation granted him a wish, sending him and his family to Disney World in June.

Saturday night, Evan got his wish of being on the ice at a hockey game as he was asked to be part of a Wishing Star Foundation presentation at the Tri-City Americans game against the Portland Winterhawks.

Evan and Wishing Star Tri-Cities chapter president Brittany Bergsson accepted a check for $1,716 from the Hanford Atomic Metal Trades Council. HAMTC and the Americans donated $3 each per ticket sold by HAMTC for the Oct. 27 game against Spokane to the Wishing Star Foundation.

“This is the third year I have accepted the check,” Bergsson said. “I thought a kid would enjoy the experience, and it worked out with Evan because he is a hockey fan. It’s nice for the fans to see where the money goes.”

When the HAMTC workers found out Evan was a hockey fan, they passed the hat to buy the little guy a Tri-City Americans jersey, complete with his name on the back. Evan received his jersey before the check presentation.

“It’s so cool,” said Evan as he slipped on his red, white and blue jersey.

Fred Rumsey, the Political Chairman for HAMTC, also presented Evan with a signed and autographed sheet of trading cards from last season.

Though Evan leads a relatively normal life today, the first few months of his life were chaotic, according to his mother, Jennifer Pratt.

“I don’t know if it was mothers’ intuition, but at the end of my pregnancy, I felt there was something wrong,” Jennifer said. “When he was born he was 5 pounds. He was really small.”

Jennifer knew there was a problem with Evan from the day he was born. He wouldn’t take a bottle, making his feeding regime problematic.

“They sent me home with IV tubing and a syringe,” Jennifer said. “I squirted formula in his mouth every couple of hours for three months. When he was 3 months old, they put him in the hospital and pumped him full of formula and he didn’t gain an ounce. On Valentine’s Day (2005) he was diagnosed with CF.

“It was so textbook. He had all the symptoms. He had a permanent feeding tube inserted when he was 5 months old. It was life or death at that point. Once we got the feeding tube in him and got him the right enzymes, slowly he began to gain weight.”

According to the Cystic Fibrosis Foundation, CF is an inherited chronic disease that affects the lungs and digestive system.

A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections, and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

For fetuses to be affected, both parents have to carry the CF gene on chromosome 7, but Evan’s dad, Jeff Pratt, didn’t pass along a No. 7 chromosome to his son. Instead, Jennifer passed along two.

“We were told it’s extremely rare,” Jennifer said. “We were told there were only three or four documented cases when he was diagnosed.”

Evan also has Russell-Silver syndrome, an imprinting error where the person receives two copies of chromosome 7 from the mother. Children with RSS tend to be small for their age and have trouble eating orally.

“He is pretty healthy right now,” Jennifer said. “We have a few minor hospital stays. We were there quite a bit when he was younger — we would spend months and months at Sacred Heart in Spokane. With all the new additions at Kadlec (Regional Medical Center in Richland), we have been able to stay here, which is wonderful.”

Evan still doesn’t eat with his month, though he does take his enzyme medication, vitamins and antacids orally.

“He is G-tube fed right into his stomach,” Jennifer said. “He has a history of ulcers because the tube rubs sores inside.”

As for the backlog of mucus in his lungs, Jennifer said he has less than others with his condition and daily chest percussion treatments aren’t necessary unless he has a cold.

“He has a vest that is supposed to do that manually, but we do it,” Jennifer said. “He doesn’t mind. We do it every couple of days just for maintenance.”

Jennifer said her daughter Rylee, 11, has dealt with her brother’s condition better than expected.

“She has her moments because he gets all the attention,” Jennifer said. “There are times when there are issues at school and they call her first (she attends Columbia Middle School) to see if it is something she can fix. She is very good about helping him.”

With the medical advancements in CF, Jennifer said Evan could live a long and happy life.

“It used to be kids would never grow up to go to grade school,” Jennifer said. “Now average is life span is 35 years old. By the time he is 35, it could be 60 or 70.”

With that in mind, Jennifer has allowed Evan to live life on his own terms.

“I told myself I could shelter him from the world and keep him safe and healthy,” she said. “But if he lives to be 70 to 80 years old, I want him to be as normal as possible. I don’t want to raise a kid that is afraid of everything.”

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