Eye Conditions and Syndromes

Learn about different types of eye conditions or syndromes that may affect young children, such as Cortical Visual Impairment (CVI), Leber's Congenital Amaurosis (LCA), Anophthalmia and Microphthalmia, Optic Nerve Hypoplasia (ONH) and Albinism.

Doctor giving the child new glasses for her vision.

Eye Conditions and Syndromes, Support, Visual Impairment

Coping with a Diagnosis: Emotional Support for Families with Visually Impaired Children

Families with emotional support are more resilient. Learn how to establish emotional support with peers, professionals, and the community to help your family thrive.

Amanda smiling.

Eye Conditions and Syndromes

Finding Joy and Strength in Raising a Child with Anophthalmia

When raising a child with anophthalmia, be patient, be kind to yourself, and take it one day at a time. Your child will fill your life with love!

Anophthalmia

Eye Conditions and Syndromes, Visual Impairment

Anophthalmia: Navigating the Path from Diagnosis to Adaptation for Parents and Their Children

Anophthalmia is a rare disorder that results in childhood blindness. Early intervention services are important to help your baby maximize their potential.

Sensory experiences for an autistic boy.

Eye Conditions and Syndromes, Visual Impairment

What is Visual Sensory Stimulation?

Age-appropriate strategies to develop a person’s visual processing abilities are an important part of meeting the body’s sensory needs.

Attentive girl looking at her doctor.

Eye Conditions and Syndromes, Visual Impairment

Stargardt’s Disease: Navigating the Challenges of Juvenile Macular Degeneration

Stargardt’s disease is the most common form of inherited retinal disease. Many accommodations are available to help with low vision and vision loss.

Frightened kid in spectacles looking from under table desk.

Eye Conditions and Syndromes, Visual Impairment

Leber’s Congenital Amaurosis (LCA): Early Diagnosis and Intervention Strategies

Leber’s Congenital Amaurosis is a genetic disease passed from parents to children that disrupts the development of the retina of the eye. This can lead to vision loss and even...

A macro view on the eye of a young child suffering from Aniridia.

Eye Conditions and Syndromes, Visual Impairment

Aniridia: A Closer Look at Congenital Absence of the Iris and Its Effects on Vision

Aniridia is a condition where part of all of the iris of the eyes is missing. It can lead to blurry vision, light sensitivity, or even blindness.

A young boy with his eyes closed.

Eye Conditions and Syndromes, Visual Impairment

Microphthalmia in Children: Understanding its Causes, Implications, and Management Strategies

Microphthalmia is a condition where the eye does not fully develop. There’s no cure, but early intervention can improve function for children with poor vision.

An ophthalmologist examines a boy who complains of burning and pain in his eyes.

Eye Conditions and Syndromes, Visual Impairment

Congenital Glaucoma: Early Signs, Diagnosis, and Treatment Options for Young Children

Congenital glaucoma is a disease where the pressure inside your baby’s eye is too high. This can damage the optic nerve and can even make your child go blind.

Pretty nice schoolgirl feeling good while feeding a kid.

Eye Conditions and Syndromes, Visual Impairment

Albinism and Vision: Unraveling the Myths and Understanding the Facts

Albinism is a genetic condition that reduces melanin. There are many myths about albinism and vision, so educating yourself with the facts is important.

Close up of young mother kissing her baby girl while lying under a blanket in the bedroom.

Eye Conditions and Syndromes, Visual Impairment

Retinopathy of Prematurity (ROP): What Parents Need to Know

Retinopathy of prematurity is common in babies born before 33 weeks. Early intervention can help prevent blindness in babies with this condition.

Optometry, vision and mother with child with glasses after examination, test and diagnosis for eyesight.

Eye Conditions and Syndromes, Visual Impairment

Understanding the Impact of Retinitis Pigmentosa in Children: A Comprehensive Guide for Parents

If you have a child with retinitis pigmentosa (RP), family members, therapists, and eye specialists can help you manage the stress that comes with vision loss.

Playful blond girl covering eyes with orange slices in kitchen at home.

Eye Conditions and Syndromes, Health & Nutrition

Eye Health Nutrition: Foods and Supplements to Support Your Child’s Eye Health

Eye health nutrition is something all parents should know about. It’s a way to protect your child’s vision by ensuring they eat foods that promote eye health.

boy sitting at table with an iPad

Eye Conditions and Syndromes, iPad Apps and Accessibility

Successful iPad Apps for Children with CVI

A collection of successful iPad apps for kids diagnosed with CVI as recommended by a TVI and CVI specialist.

laughing woman

Eye Conditions and Syndromes, Visual Impairment

Why I laughed when my daughter lost her eye

Gwen tells funny stories about raising her daughter Ivey who has bilateral anophthalmia. Gwen says it's important for us to learn to laugh at ourselves and our lives and teach...

Ivan smiling

Eye Conditions and Syndromes, Visual Impairment

Leber’s Congenital Amaurosis (LCA) FAQ

All your questions about Leber's Congenital Amaurosis (LCA) are answered here in one place. Don't see your question? Then just send us an email and we'll get right on it!

zebrafish

Eye Conditions and Syndromes, Visual Impairment

How one tiny fish may help us find a cure for blindness

At the University of Michigan Kellogg Eye Center, they are studying the visual system of the zebrafish in hopes of finding cures for blindness.

Eye Conditions and Syndromes

The search for a treatment for LCA10-CEP290

Laura Steinbusch reports on exciting news from ProQR and their trials for a treatment for blindness caused by LCA10-CEP290.

Eye Conditions and Syndromes

How Can I Get My Son To Keep His Glasses On?

A question for our parent community: I need proven techniques used to get a two year old to wear his new glasses. Any suggestions will be greatly appreciated!

ice cream cone

Eye Conditions and Syndromes

Saving Vision by Tricking Rods into Thinking They’re Cones?

A different way to think about saving vision in inherited retinal diseases may be to turn rods into cones.

girl rubbing her eyes

Eye Conditions and Syndromes, Visual Impairment

My child has LCA and presses her eyes. Is this normal? What can we do about it?

If your blind child is pressing or poking their eyes you may be looking for information on why they are doing this and what you can do to help them...

Aly with Lightaide

Assistive Technology, Eye Conditions and Syndromes, iPad Apps and Accessibility

The “Big 3 Tool Kit” for Children with CVI: PLUS the 20 Best CVI-Friendly iPad Apps!

Children with CVI often prefer clear, crisp images with little background clutter. They respond well to high contrast, bright colors (especially yellow or red), movement and LIGHTS!

Rare Disease International

Eye Conditions and Syndromes

Leaving no one ‘LCA patient’ behind: Rare Diseases International policy event

"When you received your, or your child’s, diagnosis you might have felt as if in the desert; alone and no idea which direction is the right one."

Our 20 Favorite iPad Apps for Kids with CVI

Eye Conditions and Syndromes, iPad Apps and Accessibility

Our 20 Favorite iPad Apps for Kids with CVI

The iPad is very interactive and easily tailored to suit the needs of kids with CVI, if you have the right apps. Here are our favorites!