Living with LCA

Newly Diagnosed

Understanding Leber congenital amaurosis (LCA)

Foundation Fighting Blindness – Leber Congenital Amaurosis (LCA)

Leber congenital amaurosis (LCA) is a family of rare, progressive, inherited retinal conditions which cause severe vision loss in infants and young children. In LCA, genetic mutations cause the retina, the light-sensitive layer at the back of the eye, to not function and/or develop properly. For each affected child, LCA is caused by mutations in one of 27+ genes that are usually inherited from both parents. In some forms of LCA, the mutation can cause other medical conditions.

How LCA Affects Vision

The retina contains photoreceptor cells, rods and cones, that detect light and send signals to the brain to form images. In LCA, genetic mutations disrupt the development and function of these cells, resulting in reduced or absent visual responses.

Leber congenital amaurosis (LCA): What to Expect After a New Diagnosis

If your child has recently been diagnosed with Leber congenital amaurosis (LCA), you may be feeling overwhelmed. This section outlines what typically happens in the early stages—along with supportive steps you can take as a parent or caregiver.

Early Signs

Parents often notice early signs of vision difficulty in their baby, such as trouble following objects or people with their eyes, unusual eye movements, or sensitivity to light. If you have concerns, it’s important to seek a professional evaluation as soon as possible as early signs can appear differently for everyone.

Medical Evaluation

Your child will likely see a team of specialists, including a pediatric ophthalmologist. A full eye exam and other tests, like an electroretinogram (ERG), help assess how well the retina is functioning.

Genetic Testing

Genetic testing is often recommended to confirm the diagnosis and identify the specific gene involved. This information can guide treatment options and assist with family planning. 

Diagnosis Confirmation

Once clinical exams and genetic results are complete, a diagnosis of LCA is confirmed. While this can be difficult news to receive, it also opens the door to appropriate support and long-term care planning.

Getting Support

You don’t have to navigate this alone. After diagnosis, it’s important to connect with LCA-specific or vision-loss support groups, explore early intervention programs and therapy services, and access educational and developmental resources tailored for your child.

Ongoing Care

Children with LCA benefit from regular follow-ups with their healthcare team. These visits monitor vision changes, overall growth, and health, allowing care plans to be adjusted as needed.

Treatment Possibilities

Depending on the genetic cause, your child may be eligible for emerging treatments such as gene therapy. Your healthcare providers can guide you on current options and what treatments may become available in the future.

Family Involvement

Your child will thrive with strong family support. It’s helpful for siblings and relatives to learn about LCA, and it’s equally important to care for your own emotional well-being. Counseling and peer support for parents can be invaluable resources.

You are your child’s greatest advocate. Early connection to care and community makes a real difference both now and in the future.

Early Childhood (Birth to 5)

1. Build Your Support System

• You are not alone. Connect with other parents, caregivers, and professionals who understand.
  • Look for local or online sites or groups focused on childhood vision loss or specific eye conditions.

Family Connect: https://aphconnectcenter.org/familyconnect/

WonderBaby: https://www.wonderbaby.org

Ask your medical team about family support resources and early intervention services in your area. 

2. Adapt Your Child’s Environment

• Keep things consistent. Try to keep furniture and key items in the same place to support navigation.
• Use contrast and textures. High-contrast colors and textured markers help children locate and identify objects. 
• Improve lighting. Make sure rooms are well lit, reduce glare, and use nightlights or task lights where needed.

Blind and Visually Impaired – Assessing Your Home for a Child with a Visual Impairment

Eye Care Institute – How to Create a Safe Home for the Visually Impaired and Totally Blind

3. Use Assistive Tools and Toys

• Introduce toys with sound, texture, and bright colors early on. 
• Explore simple assistive devices like talking books, contrast-rich picture books, and tactile play materials. 
• Ask specialists about tools or technology appropriate for your child’s vision level and age.

Wonder Baby – The Best Toys for Blind Kids and Where to Find Them

Industries for the Blind and Visually Impaired – Top Toys for Blind or Visually Impaired Children

A Shared Vision – Fun and Engaging Activities for Visually Impaired Children

4. Establish Predictable Routines

• Routines help young children feel secure and confident.
• Create regular schedules for meals, naps, play, and learning activities.
• Use songs, visual aids, or tactile cues to help transition between tasks. 

Teaching Students with Visual Impairments – Anticipation Calendars

A Shared Vision – Building Consistency for Visually Impaired Children

5. Support Communication and Language

• Narrate your actions throughout the day to help build language skills (e.g., “We’re putting on your red socks now”).
• Give your child time to respond, and encourage them to explore and express their needs.
• Use a variety of methods—words, gestures, objects, and play—to support understanding. 

Teaching Students with Visual Impairments -Language Development

6. Nurture Emotional Well-being

• Young children with vision loss may feel confused or frustrated—reassure them with your voice, touch, and presence.
• Help them label feelings like “happy,” “frustrated,” or “tired.”
• Celebrate small victories and give lots of praise for effort and exploration.

7. Access Early Intervention and Specialist Support

• Early intervention matters. The earlier you get support, the better the outcomes for your child.
• Contact your local early childhood services or pediatric vision team to get started with assessments and planning. Please note that qualification for specific services and support can vary state to state, or country to country. 
• Professionals may include developmental specialists, vision teachers, occupational therapists, and mobility instructors.

Why It Can Differ by State

Although early intervention is available across the United States under a federal law called the Individuals with Disabilities Education Act (IDEA), Part C, each state runs its own program, which means there can be differences in:

• Eligibility: Some states have broader or narrower definitions of what counts as a developmental delay.
• Services Offered: The types of specialists, therapies, and supports available can vary depending on state funding and local programs.
• How Services Are Delivered: In some states, services happen mostly at home, while others might offer sessions in child care centers, clinics, or community programs.

How to Get Started

If you’re concerned about your child’s vision or development, you can contact your state’s early intervention program directly, no referral is needed. A professional team will do an evaluation to see if your child qualifies for services and help create a plan tailored to your child’s needs and strengths.

If you’re concerned about your child’s vision, you can contact your state’s early intervention program directly for an evaluation and to learn what supports are available.

Helpful Questions to Ask Your Care Team:

• What early intervention services are available in my area?
• Are there any parent workshops or support groups I can join?
• What vision tools or toys are appropriate for my child’s age and diagnosis?
• How can I prepare my child for preschool or daycare?

Remember: You’re Doing a Great Job

Every child develops at their own pace. Trust your instincts, take breaks when needed, and ask for help when you need it. With your love, encouragement, and the right support, your child can build confidence, independence, and joy.

School Aged (6-13)

Building Independence

As your child becomes more capable, encourage them to take small steps toward independence — safely and at their own pace. Practice daily skills like organizing belongings, preparing simple meals, or navigating familiar spaces. With the right adaptive techniques and assistive tools, they can learn to do things in ways that work best for them.

Emotional Support Matters

It’s natural for children to feel frustrated or discouraged at times, especially when something feels harder to do. Help them understand that it’s okay to ask for help and that needing support doesn’t mean they’re not capable. Talking openly about feelings and modeling calm, positive coping skills can help them build emotional strength.

Encourage the Use of Helpful Tools

There are many resources designed to make learning and daily tasks easier, including:

• Screen readers and magnifiers for reading and schoolwork
• Apps that support organization and navigation
• Adjustments at home, like improved lighting or labeled storage spaces

These tools help children participate more fully and feel confident in their abilities.

Keep Routines and Structure

Consistent routines help children feel more secure and in control. Encourage your child to use calendars, checklists, or visual/tactile organizers to manage school, chores, and activities.

Promote Physical and Emotional Wellness

Encourage your child to stay active in ways that feel safe and enjoyable — walking, swimming, or other adapted activities. At the same time, nurture their emotional health by giving them space to express feelings and offering reassurance when they face challenges.

Foster Self-Advocacy

As children grow older, guide them in expressing their needs to teachers, family members, and peers. Learning to speak up about what helps them succeed builds confidence and prepares them for future independence.

Young Adults  (aka “Transitioning Students” aged 14-22)

There are lots of ways to prepare for your future! Learning everyday life skills and gaining more independence means doing things your way safely and confidently.

It’s normal to need extra help sometimes, but that can feel frustrating or even make you feel bad about relying on others. You might feel nervous about hanging out or going places that are hard to get around and that’s okay. Lots of teens with vision changes feel the same way. Feeling sad, anxious, or frustrated doesn’t mean you’re doing anything wrong — it just means you’re adjusting. With time, support, and patience, things really can start to feel easier and you can take charge of your future to reach your goals with confidence.

The teen years can be challenging, and living with a retinal condition can make things feel even more complicated. But the good news is, there are plenty of ways to make everyday life easier and more manageable. Here are a few simple strategies that might help. 

1. Talk to Others

You’re not alone. Connect with other teens who have similar experiences through support groups or online communities.

Lighthouse Guild Tele Support for Teens

Vision Loss Resources

2. Make Your Space Work for You

Adjust lighting, reduce glare, and organize your room or study area to make things easier to find and navigate. (HOW TO’s and ECC blogs)

Teaching Students with Visual Impairments – Adjust Lighting & Reduce Glare

3. Try Helpful Tech

There are awesome tools out there—like screen readers, magnifiers, and apps—that can make school and daily tasks more accessible.

Perkins School for the Blind – A to Z of assistive technology for low vision

4. Stick to a Routine

Creating a daily routine can help you feel more in control. Keep track of schoolwork, appointments, and other tasks to stay on top of things.

Teaching Students with Visual Impairments – Organization & Time Management Strategies

5. Becoming More Independent, One Step at a Time

Adjusting to low vision takes time, but you can still do the things you love — just in new ways. Everyday tasks like reading, cooking, or getting around might feel different at first, but you can learn new techniques and use helpful tools to make them easier. With practice, support, and the right technology and adaptive tools, you can stay confident and  independent while continuing to do what you enjoy

Perkins School for the Blind – College Readiness Checklist

Perkins School for the Blind – Journey to Independence

6. Be Open About Your Needs

Let your friends, teachers, and family know what works for you. Don’t be afraid to ask for help or speak up about what you need.

7. Look After Your Mental Health

Feeling overwhelmed or frustrated is normal. Try stress-relief techniques like music, journaling, exercise, or talk to someone you trust—a counselor, friend, or parent.

8. Keep Moving

Staying active can boost your mood and energy. Ask your doctor about safe ways to stay fit and have fun.

Camp Abilities World

Teaching Students with Visual Impairments – Recreation & Leisure

Everyone’s different, so take time to figure out what works best for you. And remember, it’s okay to ask for help.

Additional Resources and YouTube Videos to explore:

Molly Burke – https://www.youtube.com/@MollyBurkeOfficial

YouTuber & Motivational Speaker

Molly shares her life as a blind advocate after losing her sight to retinitis pigmentosa. On her channel, she speaks openly about accessibility, self-confidence, and navigating the world with vision loss.

Sam – The Blind Life – https://www.youtube.com/@theblindlife

Creator & YouTube Host

Sam is the creator of The Blind Life, a YouTube channel dedicated to sharing life with vision loss. Through honest stories, tech reviews, and helpful tips, he helps others discover tools and strategies to live more independently. Sam’s warm and practical approach builds awareness, confidence, and community within the blind and low-vision world. 

Mike Mulligan – https://www.youtube.com/@Blindonthemove

Content Creator & Accessibility Advocate

Mike Mulligan shares his journey of living without sight, offering real-life tips and stories about navigating daily life with blindness. Through practical demonstrations and open conversations, he inspires others to embrace independence and raises awareness about accessibility for all. 

Adults

Living with Retinal Disease

Adapting to low vision can be challenging, especially when everyday tasks like reading, cooking, or getting around start to feel different. It’s normal to feel frustrated, tired, or more dependent on others at first but these feelings don’t last forever.

With time, support, and the right tools, many people discover new ways to stay active, confident, and independent. You’re learning to do things differently and every small step forward is a sign of strength and progress.

Follow Your Treatment Plan with Care

Your treatment plan was made just for you, and following it closely is one of the best ways to care for your eyes.

• Keep up with all appointments, medications, and treatments.
• Ask your care team any questions — they’re there to help and support you.
• Let your doctor know if something doesn’t feel right or if you experience side effects.

Notice How Your Vision Feels

Staying aware of changes in your vision helps your doctor provide the best care possible.

• Attend regular eye exams as recommended.
• If you notice any sudden changes in your vision such as new floaters, flashes of light, or eye pain — contact your doctor right away. These symptoms can sometimes signal changes that need prompt attention, and getting care quickly can help protect your sight.

Take Care of Your Emotional Well-Being

It’s completely normal to feel a mix of emotions when your vision changes. Worry, sadness, or frustration are all part of the process. You don’t have to go through it alone.

Many people find comfort and strength by:

• Joining support groups where others truly understand what you’re experiencing
• Talking with a counselor or therapist who can help you work through emotions and build coping strategies
• Opening up to friends and family who care and want to help

Remember, asking for support isn’t a sign of weakness. It’s a sign of strength and self-compassion.

Foundation Fighting Blindness – Mental Health Resource Center

Finding Support and Resources

You don’t have to figure everything out on your own. Organizations like the American Foundation for the Blind (AFB) and the National Federation of the Blind (NFB) offer great resources, advocacy, and ways to connect with people who truly understand what you’re going through.

It can also help to work with an eye care professional who specializes in low vision. Together, you can explore different tools, techniques, and strategies to make daily life easier and help you stay independent and confident.

Losing vision can be very challenging, not just physically but emotionally too. Many people find themselves feeling anxious, lonely, or low, yet often don’t receive the mental health support they need. By offering care that gently combines emotional understanding, social connection, and practical help, we can better support individuals in living well and adapting to their changing world.

Mental Health Matters for Caregivers of Children with LCA

Caring for a child with Leber Congenital Amaurosis can be all-consuming, but it’s essential for parents and caregivers to regularly check in with themselves and ask, “How am I feeling right now?” rather than only focusing on tasks. Modeling emotional awareness and self-care teaches your child resilience and emotional strength.

Rest is not a luxury, it’s a necessity. To remain present and supportive, caregivers must also care for their own mental well-being. This includes taking breaks, practicing hobbies, and knowing when to step back. Therapy may also be helpful.

You don’t have to do it alone. Building a support system—whether through local groups, a therapist, or peer connections—can make a difference. The National Alliance on Mental Illness (NAMI) is a good resource for helping manage mental health.

Remember: “If you don’t build half the bridge, you won’t go far.” Taking care of yourself is the first step in continuing to care for others.

Articles – 

Space Coast Ophthalmology – Vision and Mental Health: Exploring the Connection

Ophthalmology Health – Children’s mental health and the impact of vision impairment 

CDC – About Vision Loss and Mental Health

Vision Center – Mental Health Effects of Vision Loss

Additional Resources –

Fight Against Blindness

Foundation Fighting Blindness – Mental Health Resource Center