Fighting Blindness | Parenting, Jan. 2012

A Family’s Vision

Gil and Jeanne Iames fight for their son’s sight

Parenting

Parenting

Joe enjoys traveling with his family, seeing as much as he possibly can.

Joe Iames is like a lot of 16-year-old boys. He enjoys playing football for his high school team, riding his four-wheeler and listening to music. It’s not uncommon to find him swimming, hiking and traveling with his family, who lives on the south side of Indianapolis, since they enjoy being outdoors and seeing the world’s natural beauty.

But for Joe, sight is not something he takes for granted. Joe’s sight is slowly diminishing from a disease called retinitis pigmentosa, an eye disorder in which the retina is damaged. It’s an uncommon condition that affects 1 in 4,000 people in the United States, according to the National Institutes of Health. There is no current treatment.

Because of retinitis pigmentosa, or RP, one day Joe may be blind.

In the beginning

When Joe was young, his parents, Gil and Jeanne Iames, noticed he had trouble learning the alphabet. It was hard for him to distinguish letters, and reading didn’t come easily.

Doctors said he had a slow processing speed, like dyslexia.

“We believed that all these years,” Jeanne says.

Each year they also took Joe to the eye doctor; however, the following school year, he would fail his eye exam and be sent back for a new prescription.

Growing up, Joe often bumped into things or tripped over shoes on the stairs, especially in low light –– he seemed to be a little clumsy, his parents always thought.

Everything changed

Parenting

Gil, Jeanne and Joe Iames.

Eventually, Joe was old enough for contact lenses. Gil took him to the eye doctor like many times before. He told the doctor about his bad night vision.

After a careful look at Joe’s retinas, the doctor explained that Joe might have a condition that robs sight, generally beginning with decreased peripheral and night vision.

Sent to a specialist, Joe, Gil and Jeanne sat patiently in the room after a few tests were administered. Within the first five minutes, they received the news that changed their world.

“Your son has retinitis pigmentosa,” the doctor told them. “But he’ll probably finish school before he goes blind.”

What initially went over Joe’s head crushed his parents. All their dreams and hopes for their son were taken away.

“It’s like you’re shattered,” Gil says. “All of a sudden you’re rethinking everything.”

It was hard to accept that this would change the plan they had in mind for their son.

“After being in mourning for about a week or so –– because it really is a grieving process –– I did a lot of praying,” Jeanne says. “And I just knew in my heart that God was going to take care of Joe and had a beautiful plan in store for him.”

Making adjustments
A lot of things started making sense after the diagnosis. Joe wasn’t really clumsy –– he just couldn’t see.

Joe had adapted long before his visual deficit was detected and has been making adjustments his whole life.

He’s developed a system for himself; when leaving the barn at night, Joe takes a certain number of steps to the left, then sticks his hand out to follow the tree line until he can see the lights around the house.

He has trouble seeing below normal eyesight, so curbs can be a challenge. Gil and Jeanne try to give him little cues like, Take three steps forward and reach your hand out, or, The escalator is going to stop in about 20 seconds.

Finding support

Parenting

Joe’s Fight for Sight Team walked in the Foundation Fighting Blindness' VisionWalk.

After Joe’s diagnosis in November 2010, the Iames family got involved with the Foundation Fighting Blindness and started raising funds for the 2011 VisionWalk.

“Right now there is no cure for retinitis pigmentosa, but through the help of groups like the Foundation Fighting Blindness, they’re making great strides in treatments like genetic therapies, medications and stem cell therapies,” Jeanne says.

Though the research may not benefit Joe, Jeanne and Gil are hopeful.

“But we’re also hopeful that another parent doesn’t find themselves in our shoes 20 years from now,” Jeanne says. “That when they tell them their child has RP, they can offer a cure.”

In their first year participating in the VisionWalk, Joe’s Fight for Sight team raised $22,000. The support from friends, family and people they had never met exceeded their expectations.

Joe and his parents continue to raise awareness and are motivated by the relationships they’ve developed through the foundation.

Last summer, they attended a vision conference, which held a big dinner and dance on the last night.

Gil smiles as he recalls the scene on the dance floor. “They were rocking; it was like bumper cars,” he says. “But you know what –– they were having fun.”

“It’s very uplifting to see people who have learned to live with their visual impairment and are still loving life,” Jeanne says.

Opportunities like this have helped the family move forward with hope for the future.

Looking forward
The Iameses do worry about the future. They wonder whether Joe will be able to work or will see well enough to live on his own.

There are many things that are uncertain, but Joe is learning skills now that will help him in the future.

Through a vocational program, he’s learning to work on small engines and wants to pursue a career in the automotive industry.

“Eventually he’d like to go into marine mechanics –– he likes to pull things apart and is good with engines,” Jeanne explains. “We’re hoping that is something he can carry with him as his sight diminishes.”

Right now, they want Joe to experience as much as possible –– to see as many places he can so he has those memories later on.

While they are trying to prepare Joe for the loss of his vision, the Iameses are also very hopeful for new treatments that may help maintain partial sight.

“We’ve all got our struggles, and this may be Joe’s, but it doesn’t mean he can’t have a happy, fulfilled life,” Jeanne says. “That’s what we hope for him, sighted or not.”

For more information on retinal diseases or to support the Foundation Fighting Blindness, log on blindness.org.

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