Crowley brothers rise above genetic vision condition

Tuesday morning, amongst nearly 25 of his peers, fourth-grade student Colby Crowley announced his candidacy for Mayor.

As his classmates said, “Really?”, Crowley said, “I have a lot of good ideas. We could bring Avanti’s to the space next to the Apollo Mart and have gondolas!”

While Crowley’s vision for the future of Mahomet may be bright, he and his brother Noah, an eighth grade student, will have to fight for their physical vision for the rest of their lives.

The Crowley brothers were diagnosed with X Linked Juvenile Retinoschisis, a rare genetic disease which affects nearly 1 in every 5,000 to 25,000 men worldwide, about five years ago.

The boy’s mother, Jennifer said Noah has always had trouble seeing things in the distance, but they just thought his had poor vision. After Noah visited five different optometrist, and told his parents the glasses were not making a difference in his vision, the family decided to take additional steps to figure out what was wrong with this son.

Because Noah’s ocular scans showed concerned, an optometrist suggested they visit the Lighthouse for the Blind in Chicago. He also told them to bring Colby, since X Linked Juvenile Retinoschisis is a specific genetic disease linked to males.

X Linked Juvenile Retinoschisis is passed onto sons by the mother. Men with X Linked Juvenile Retinoschisis cannot pass the disease onto their sons.

“When I pulled up, I said, “Okay, this is serious. I didn’t know what was happening until I was there.”

After running through tests, it was confirmed that Noah, then in third grade, and Colby, even though his vision was okay at the time, had the gene which caused their condition. Jennifer, the carrier of the gene, said there was a 50/50 chance she could pass it onto one of her sons. When she found out both boys had the condition, she was devastated.

Noah’s vision at the time was 20/40. Now, even with glasses, Noah’s vision is 20/50 in his good eye and 20/70 in his bad eye.

“He’s at this line where if his bad eye gets any worse or his good eye gets worse, he probably won’t be able to drive at night, and possibly may not get his license at all,” Jennifer said.

Jennifer said she began to see the effects of the disease in Colby when he was in first grade. As she dropped him off to school one morning, Colby, very nonchalantly, told his mom everything in one eye was red. She knew immediately that he had a hemorrhage in his eye, and that he needed to be seen immediately, as a hemorrhage can lead to retinal detachment, something the boys will be susceptible to for the rest of their lives.

After visiting Carle, the Crowleys took Colby to Northwestern where doctors decided to hold off on surgery to drain the blood, and see if Colby’s body would take care of the problem itself. In the meantime, the first grade student could not play at recess or play any sports because he could not risk being hit in the head.

A year later, Colby’s doctors informed the Crowleys that the blood had drained from his eye, but he lost all peripheral vision because of the hemorrhage.

“The hardest part for us was, let’s fix it,” Jennifer said. “But there’s just no fixing it. It’s just something that is going to continue to get worse.”

Since second grade, Colby’s vision has continued to decline. The decline of vision will begin to stall once the boys reach young adulthood, but will pick up again once they hit their early 50’s. Jennifer said most men with this disease end up being declared legally blind or worse.

Although sight is difficult for both boys, Colby and Noah find refuge in sports. Noah, an avid football player and wrestler, has seen success both on and off the field.

“He’s a very good athlete,” Jennifer said. “It comes from lot of hard work.”

Noah, played quarterback for his CIYFL football team. Without glasses he led the team to the championship game two years ago. Doctors told the Crowley’s that Noah has adjusted to his sight limitations, and does not know any better.

“It’s amazing he can throw the ball spot on,” Jennifer said.

When Noah’s dad, Chet, played catch with him as a toddler, Noah began to adjust so that he could succeed.

Jennifer said both boys have an IEP in school, and while Colby takes the help, Noah continues to want to figure out the world on his own.

“He knows what the future holds for him,” Jennifer said. “He’d rather muscle his way through it. He’s a straight A student, so how can you argue with that?”

Colby was just cleared to play soccer, if he wears his protective goggles.  He will join the Mahomet-Seymour Soccer Club 10U roster this winter and next spring.

Allowing the boys to play sports was a tough decision for Chet and Jennifer. They were made aware of the risks early on, but the doctor told them they could let the boys be kids or shelter them.

“That’s always been a struggle for us because you want them to play and do all these great things, but the mom in me is always looking at the what if,” Jennifer said. “I don’t think anyone realizes the daily struggles we or the boys go through.”

Last year, during a CIYFL practice, V’Angelo Bentley, for the University of Illinios football team, spoke to Noah’s CIYFL team. Colby, a young man who will approach anyone, befriended Bentley. That night, Jennifer received a text message from Head Coach Ron Zook, which said Bentley wanted to include Colby in the 2014 football season.

Colby was invited to walk in the Grand March with the University of Illinois football team, he escorted them on the field, and the family was given seats close enough for the boys to see the game.

“We were so overwhelmed and blessed by that,” Jennifer said. “It was nice to see someone take time and invest something in (Colby). They have a connection that’s pretty cool.”

Jennifer said the boys typically can’t go to live sporting events because they cannot see what is happening on the field.

“It’s hard because you see a child with glasses and you think, ‘They have glasses so they must be able to see alright.’ But that’s not the case at all. Even with their glasses, their vision is really compromised,” Jennifer said.

Even watching sports on the television at home is hard for the boys. While the family can see the score from the seat, the boys have to get up close to the TV to really know what is happening in the game.

Colby decided to ask Bentley to his birthday party three weeks later. Jennifer said Bentley responded within two minutes that he would be there. She said he bowled with the kids, ate pizza and gave Colby an autographed football.

Now Bentley texts Jennifer regularly to make sure Colby is doing okay. He’s attended a few CIYFL games and invites the family to eat at Main Street Wingery every now and then.

“I’m sure he meets kids all the time, but he’s taken the time to invest in Colby,” she continued.

Bentley even showed up for Colby’s “Star Student” presentation in class Tuesday. He handed out brochures, which talked about his relationship with Colby, to the class. Students also lined up for autographs before lunch.

While Colby has dreams of becoming Mayor, he also spends time thinking about Bentley’s career. Bentley is getting ready to take his next step in his football career as he seeks out a professional team to play for.

Colby told Bentley he would like to see him play for the Seattle Seahawks, he also does not want to see him play second string in the NFL. Colby told Bentley that the Oakland Raiders may be a better fit.

Colby also shared his faith with his classmates Tuesday. He told them that he was looking forward to seeing what God had planned for his life. His mom tell him that this condition was given to him for a reason, and Colby really believes that he can make a difference in this world.