“I Am Strong, and I Can Do Hard Things”: Anna Weber’s Journey with Batten Disease

Golf has always been part of 15-year-old Anna Weber’s life.

Growing up in Rock Port, Missouri, with a golf-loving family meant plenty of time around the course. So, when Anna decided she wanted to play on her high school golf team, it felt like a natural next step.

There was just one challenge to figure out: Anna sees at approximately 20/3000. She has lost her central and upper peripheral vision and sees best using her side peripheral vision, favoring her left.

Anna was diagnosed with CLN3 Batten disease at 9 years old. A change in the CLN3 gene causes the rare neurodegenerative disease and affects the function of cells throughout the body. There is currently no cure, and the disease can affect vision, memory and life expectancy.

But Anna has never been one to shy away from trying something new. Whether she’s picking up a golf club, meeting new people or thinking about her next adventure, she is determined to experience as much as she can along the way.

A Love of Golf Leads Anna to Outlook Enrichment

Earlier this year, Anna and her mom, Libby, were visiting a school for the blind in Nebraska City when they attended a presentation from Outlook Enrichment and learned about the Stanley M. Truhlsen, Jr. Blind Golfers Clinic. For a teenager who had grown up around golf, it was music to Anna’s ears.

From February through May, Anna and Libby spent most Saturday mornings hopping in the car, turning up the music and making the drive to Omaha for practice.

There, Anna began working with Steve Blaskovich, an Outlook Nebraska board member who leads the clinic and has helped grow the program. Steve took the time to learn how Anna sees best and adapted his coaching to what worked for her. Using verbal cues, he helped Anna understand distance and how much power to put behind her swing. With practice, she began making more consistent contact with the ball.

For Anna, having her own clubs made the experience even better.

“I was excited to have my brother, Ethan, fit me for my clubs. It makes playing golf so much more fun to have my own things. I love to hit the driver. It is the one golf club you can hit far and hard! It is so much easier to get coaching advice from an Outlook coach than from my parents,” Anna shared.

But somewhere between the swings, laughs, and Saturday morning drives, Anna was also finding something she and Libby had been looking for: a community.

“As a mom, I sometimes wonder if there is a place in society for Anna. I get scared, nervous, and sad because she has goals, but I’ve only witnessed those things accomplished by people with vision. At Outlook Enrichment, the focus is not on the person’s disability but on building on their strengths. Sure, they asked how Anna sees best or what adjustments she might need, but that was not the main focus,” said Libby.

From the Blind Golfers Clinic to a Third-Place Finish with Team Outlook

All those Saturday mornings gave Anna opportunities to put her new skills into action.

She went on to play in Outlook Enrichment’s annual Tee It Up Fore Sight golf tournament, which quickly became one of her favorite experiences. It was a chance to take what she had practiced at the clinic onto the course while continuing to be involved in the Outlook community.

In August, Anna represented Outlook Enrichment and Outlook Nebraska during our first year participating in the RSM Putting Challenge as part of Youth Day at the Pinnacle Bank Championship. She teamed up with an experienced youth golfer from Elkhorn North and a Korn Ferry Tour professional.

Seventeen teams competed, and Team Outlook tied for third place, earning $6,300 for Outlook Enrichment. Those funds help us continue creating opportunities for people who are blind or have low vision to try new things, build practical skills, connect with others, and grow their confidence. That’s what experiences like this are all about. That’s what experiences like this are all about—getting out on the green, giving it a try, and having fun while doing it.

For Anna, the experience was another chance to see just how far she had come, from practicing her swing on Saturday mornings to taking the green alongside a professional golfer. Through it all, her fearlessness and optimism continue to shine.

Outlook Explorers Opens the Door to New Adventures

Golf may have been what first connected Anna with Outlook Enrichment, but it wasn’t where her involvement ended.

In July, Anna attended Outlook Explorers: Journey Beyond Sight Camp, which returned for the first time since 2019 in partnership with the University of Nebraska at Omaha’s School of Health and Kinesiology.

From July 19–24, Anna joined youth from across the community for a week focused on trying new things, building confidence and making connections. Campers stepped outside their comfort zones through activities ranging from kickball to goalball, learning new skills and having plenty of fun along the way.

For Anna, it was another opportunity to embrace something new and have fun without worrying about being the best at it.

The smiles, laughter, and growth throughout the week were a reminder of why opportunities like Outlook Explorers matter. For young people who are blind or have low vision, having a place to try something new alongside peers who share similar experiences can be just as valuable as the activity itself.

That sense of community has meant just as much to Libby.

“I want Anna to continue to be happy with herself and to have one good friend who includes her and loves her for who she is. Now that I have met a community of such drive, compassion, resources and love, we may have to travel, but I know there is a place for Anna,” said Libby.

And Anna already has plenty of ideas about what she wants to try next. She’s interested in blind soccer and cooking classes, and someday, she would even love to scuba dive in the depths of the ocean.

 

Group of diverse people smiling together, representing community connection

 

Anna is open about the fact that the future can be scary. She worries about becoming fully blind and what that could mean for staying social and independent. But those fears haven’t stopped her from traveling, meeting people, trying new activities, and finding ways to do things for herself.

She doesn’t want people to feel sorry for her or make assumptions about what she can and cannot do because of her vision. She wants people to know that she is just as capable as anyone else.

At 15, Anna has plenty of adventures still ahead of her. This year alone, she practiced with the Stanley M. Truhlsen, Jr. Blind Golfers Clinic, played in Tee It Up Fore Sight, helped Team Outlook earn a third-place finish at the RSM Putting Challenge, and embraced every opportunity Outlook Explorers had to offer.

And through every new experience, Anna carries a simple reminder with her: “I am strong, and I can do hard things!”

We have a feeling Anna has plenty more “hard things” she’s ready to try.

 

 

Whether you’re looking to try something new, meet others, or get more involved, there’s a place for you in the Outlook Enrichment community.

Reach out to Outlook Enrichment today to learn more about our programs, upcoming events, and how you can get involved.

One Family’s Journey Raising Two Sons with Leber’s Congenital Amaurosis

When Marina and Cameron McCombs welcomed their second son, Reuben, they learned something unexpected: he was born blind with Leber’s Congenital Amaurosis (LCA), a rare genetic condition that causes severe vision loss. Until then, they were unaware they were both carriers of the same gene. They later learned that each pregnancy carried a 25% chance of having another child with LCA. Their third son, Alden, was also born blind.

Although the diagnosis came with plenty of unknowns, one thing never changed for Marina and Cameron: the way they wanted to raise their children. Today, they focus on helping all four boys experience life to the fullest.

 

Building Community Through Adaptive Recreation

Before moving to Nebraska when Reuben was two years old, the McCombs family lived in a small town in Texas. While some resources were available, opportunities to connect with other families raising blind children were limited. After settling in Nebraska, they learned about Outlook Enrichment through Reuben’s orientation and mobility counselor at school. Their introduction to the organization came through the annual Family Beep Baseball Clinic, which quickly became a family favorite.

“Reuben was so young when we first went to beep baseball,” said Marina. “Now, he is much older, and he can do so much more and participate fully in all the various stations. I think the most important thing he has taken from beep baseball is that we can join in different physical activities with adaptations. We love doing things as a family, and these events are a great way to grow closer together and have fun. It’s also great for our sighted children to see how to adapt activities for their blind brothers.”

 

Raising Blind and Sighted Children with Equal Expectations

Reuben has become a familiar face at Outlook events with staff, volunteers, and other clients. A true adventurer, he loves exploring and approaches every challenge without fear. Over the years, he has learned that he can run just as fast, climb just as high, and participate right alongside his sighted peers. More importantly, he has built the confidence to know that being blind should never keep him from participating in activities.

Reuben is a favorite at Outlook events with staff, volunteers, and other clients. A true adventurer who loves exploring and tackles every challenge with no fear. He has learned that he can run just as fast and climb just as high as his sighted peers. He’s built up the confidence to know he shouldn’t be excluded from activities just because he is blind. This is because he and his brothers, both blind and sighted, were all raised with the same expectations.

“We look at each of our kid’s personalities and what they prefer, especially their different temperaments. All of our kids have the same expectations, depending on their age or development level. We make adaptations for our blind kids, but they are still expected to participate in everything that we do as a family,” shared Marina.

Those adaptations are often simple. Reuben sweeps the kitchen floor toward a chair before collecting the crumbs underneath. When Alden helps with dishes, the family makes sure there are no knives in the sink, a precaution they would take for any child his age. Whether they are doing chores or spending time outdoors, the goal is the same: everyone participates.

 

Finding Strength Through Shared Experiences

Like many parents, Marina and Cameron faced plenty of questions and anxieties after Reuben’s diagnosis. One of the most valuable resources they found was other families who had already walked a similar path. Family events gave them the opportunity to watch, learn, and ask questions of people further along in the vision loss journey than they were.

Meeting other families with blind children and tapping into resources from various blindness organizations in Omaha has been central to Reuben’s growth. He has learned everyday life skills, Braille literacy, cane travel, and participates in adaptive recreation and outdoor adventures.

“Without all of these organizations that have helped Reuben and connected him with so many great people, we would definitely be in a much different place in our journey. Reuben looks forward to every activity and feels special to be able to participate. We’re looking forward to beep baseball. It is always super fun for our family! It’s just awesome to be able to come to events as a family where every one of us can feel included,” shared Marina.

 

"Amp Up Your Social Calendar - Browse Events." A young girl is rock climbing in the graphic.

 

Looking back, Marina and Cameron couldn’t have imagined how much their family would grow through this journey. They’ve watched Reuben and Alden develop confidence, independence, and a love for trying new things. And as all four boys continue to grow, one thing remains the same: every child is encouraged to participate, explore, and enjoy life to the fullest.

For families navigating blindness or vision loss, no one should have to walk the journey alone. Whether you’re looking for support, adaptive recreation, or ways to connect with other families, Outlook Enrichment is here to help.

Group Exercise Classes (now thru August)

Lose the excuses and gain strength with our adaptive group exercise classes. The group environment creates both accountability and support. Classes are led by a certified exercise science instructor who is also visually impaired. Exercises are described verbally instead of shown visually, and encouraging suggestions will help ensure you’re performing the moves correctly. Workouts can also be adapted to fitness level, age, and goals. Let us help you set your fitness goals and make your workout what you want it to be, whether that’s stretching, strength building, or simply getting some movement in.

Classes are offered:
Tuesdays 2 – 2:45 p.m.
Wednesdays 2 – 2:45 p.m.
Thursdays 2 – 2:45 p.m.

Registration includes three classes a week from now through the end of August, but feel free to choose to attend whichever days work best with your schedule.

Teeing Up New Experiences & Smart Estate Planning

In this episode, we meet two Outlook associates who aren’t afraid to step outside their comfort zones. Marisa Ethofer, Outlook Nebraska’s HR Generalist, and Megan Mackie, Outlook Enrichment’s Community Events Coordinator, both took a swing at something new by participating in Outlook Enrichment’s Blind Golfers Clinic on our golf simulator and later hitting the greens at our annual Tee It Up Fore Sight tournament. They share their stories of practicing, playing, and embracing the unexpected.

We’re also joined by attorney Steve Schmidt, who breaks down the basics of estate planning, why it matters, especially if you or a loved one has a disability and receives government assistance, and how to protect your assets for the future.

The Power of Adaptation in Recreation & Life

In this episode, we’re joined by Dr. Michael Messerole and Glen Wragge from the University of Nebraska at Omaha’s School of Health and Kinesiology. Both have played a key role in shaping Outlook Enrichment’s Adaptive Recreation Program.

They share the creative challenges and rewarding moments they’ve encountered while working with youth who are blind or visually impaired, and how these experiences have reshaped the way they teach, plan, and think about inclusion in physical activity.

We’re also joined by Keli O’Dell, a machine operator at Outlook Nebraska who has been part of our team for seven years. Born with cataracts that led to lifelong low vision, Keli opens up about his journey and what working at Outlook has meant to him personally and professionally.