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The Friday night lights are back in Idaho. On football fields throughout the state, high school teams seek to represent their community well and compete for glory on the gridiron.
This Friday night, however, one eastern Idaho team will be competing for much more than just a win. The Rigby Trojans are competing for Isaac Edwards.
Isaac, called by his nickname 'Ike', is a four year-old boy from Rigby dealing with a life-threatening disease called Hurler's Syndrome, a genetic disorder where his body doesn't produce enzymes needed to break down substances in body cells called GAG's. If the GAG's aren't broken down, they build up inside each cell in the body, eventually leading to cell, tissue and organ damage.
"When these GAG's aren't broken down, it affects brain tissue, bones, the heart, airways, you name it - it affects every system in the body," said Brittany Edwards, Ike's mom.
The official name of the disease is Mucopolysaccharidosis Type 1, which has three different levels of severity: Hurler's (most severe), Hurley-Scheie (moderate), and Scheie (least severe). This affects approximately 1 in every 100,000 births in the United States - and there is no known cure for it. Most children with Hurler's syndrome don't live past 10 years old. Ike is believed to be the only case of this kind in Idaho.
However, there is a treatment available to help patients like Ike battle with this malady.
"About 10 years ago, the treatment was developed where now kids can receive a weekly IV infusion to give them that missing enzyme to break down those GAG's so that it won't cause as much damage as there would be without it," Edwards said. "It helps to lessen a person's symptoms."
The treatment is effective for all areas of the body except for the brain, as Edwards said the injected enzymes are unable to cross the brain/blood barrier. Another part of treatment is a bone marrow transplant using stem cells.
Ike went through the bone marrow transplant on January 7, 2014 at the University of Minnesota in Minneapolis. Ike and his mom spent five months in the hospital while he recovered.
"They basically wipe out the DNA in their system and start over again," she said. "If it's successful, the body will start making the missing enzymes again which hopefully then gets into the patient's brain and helps stop them from becoming more cognitively declined."
Not all kids go through the amount of treatment that Ike has thus far. In fact, Ike is the first person known to be 100 percent engrafted - meaning all of his bone marrow has been replaced by stem cells and donor marrow - and to continue weekly enzyme treatments for Hurler's Syndrome.
"The doctor's are working to see if Ike can be medically published and use this treatment as a trial to see if it works effectively - and if it does, it may become the new standard," Edwards said.
Edwards said that while this has been a long and taxing process on her whole family, their desire to help Ike as much as they possibly could was never in question.
"I just feel like I wouldn't be doing my job as a mother if I didn't do everything possible to give him a longer and more enjoyable life. We want to give him every opportunity that we can. If it gives us an extra six months with him it will have been 100 percent worth it," she said.
While that goes on, life continues for the Edwards family in Rigby. Ike is your typical small child - full of life, always wanting to play, and even mischevious.
"He runs and jumps and plays like every other kid," Edwards said. "Ike loves to play with balls and trains and cars. He can't really sit still but if I ask him to do things like pick up his toys or throw something in the garbage for me, he'll do it. He doesn't talk well because of developmental delays, but he attends a special ed preschool and he's doing pretty dang good."
Edwards, who is married to her husband BJ and has a 14 year-old son and 7 year-old daughter, says that her family tries their best to treat Ike as if he was a completely normal and healthy child.
"I treat Ike like any other child and we try to not focus so much on his disease and just let him be a child. We don't want his disease to limit him," she said.
As for Ike's prognosis, the results have opened the eyes of doctors.
"The doctors at the Shriners Hospital and at Primary Childrens are just in awe because of how well Ike is doing," said Edwards. "The doctors in Minnesota told us that they don't know how he's going to do and don't know what's going to happen because they've never had a patient not stop the IV treatments after the bone marrow transplant. But so far, he's doing very well."
Edwards said that the community support for her family has been incredible - and not limited to just Rigby.
"When we did his initial fundraiser, I could not believe the outreaching of people from around eastern Idaho. From St. Anthony and Sugar City all the way to Idaho Falls and St. Anthony, it's been unreal. We feel like we never could have done it without our community behind us."
She mentioned that the help her husband received in taking care of the kids while she and Ike were in Minnesota was such a blessing to her family as well.
So what does this have to do with the Rigby Trojans varsity football team?
Assistant football coach Kip Blanchard knew both Brittany and BJ while growing up in the Upper Valley. He had also seen all of the support and outreach given to the Edwards family on social media. Blanchard decided to get the football team involved in helping Ike and his family have a special night together with the community of Rigby.
"Last year, we had a night where we honored a kid named Lucas Hammer who was battling cancer at a football game," he said. "It was cool because we wanted honor him and show him and his family that we were all behind him as he went through his struggles. When I saw and heard about Ike's story, I knew that this was something we needed to do."
Blanchard said it didn't take much convincing of head football coach Randy Waite to begin to make "Fight For Ike Night" a reality.
"Coach Waite was on board with it and the community has stepped up in a big way again," he said. "It's all about making a kid feel special and to have him be at the center of Rigby for a night."
Blanchard said that thanks to the gracious help of the school district and local businesses, "Fight For Ike Night" will hopefully be a smash hit for Ike and his family.
He said that Dansie Dental donated a large number of t-shirts for the event that say "Fight For Ike Night" on them. Hats and lanyards with the Trojans logo and "Ike" stitched in them have been made. One of the team moms helped make customized jerseys for each member of the family. Sideline passes for Ike and his family will be given to allow them to be close to the action. A large banner recognizing Ike will be displayed on the track at the football stadium. Ike will get to lead the Trojans out of the tunnel onto the field and even get to help in the coin flip to begin the game.
"It's been quite the journey getting everything correlated and set up for this event," Blanchard said. "A lot of work, but it's worth it all the way. The Rigby 12th man was big for us in doing this. We want to bring awareness to this disease and honor the family while we are doing it."
Edwards said that she and her family are overwhelmed by the support.
"We are so completely honored and humbled that the football team wants to honor Ike, it's just awesome," she said. "My husband and I are looking at it as a way for us to tell the community thank you for all that they have done for us."
Not only are the Edwards thanking the community, the Trojans are thanking the Edwards.
"Our team has had the opportunity to be able to be around the Edwards family and to see that maybe going through hard drills and workouts isn't so bad after all when compared to what Ike is going through," Blanchard said.
The Trojans recently had a team dinner with Ike and his family, eating Ike's favorite foods: spaghetti, salad, sliced bread and rootbeer floats. Brittany talked to the team about Ike's condition and the struggles he has gone through. BJ, who played college football at Ricks College and later UNLV, counseled the team to buy in to everything the Rigby coaching staff has been teaching them and that the results the program has seen in the last three years don't happen without hard work.
"It was good for our kids to meet with them and learn from them and to not take what they have for granted," Blanchard said. "We don't really know what hard is until you look at Ike and see his struggles or that he's strapped to a machine for five-hours at a time to get medicine that will help prolong or even save his life."
While the results of the game on Friday night may look the same in the standings, they will mean a completely different thing for the Trojans. On Friday night, the Trojans will fight for Ike.
The Trojans take on the Skyline Grizzlies tonight at 7:00 p.m. Fans are encouraged to arrive at the football stadium early. For those who can't attend, the game will be streamed with full video and audio on IdahoSports.com.
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