Understanding Leber Congenital Amaurosis

Leber Congenital Amaurosis (LCA) is an inherited retinal degenerative disorder that causes an infant to be born with severely impaired vision. The infant may also be born with or develop roving or jerking involuntary eye movements. There is no significant treatment and the child may benefit from the use of low-vision aids. 

  • Children born with LCA have poor vision because of the impaired development of the retina which is the light sensitive film at the back of the eye.  

  • Given the severity of the condition, it is one of the most extensively researched inherited retinal disorders. 

  • Electroretinography (ERG) testing, which detects function of the retina, is important in measuring if the child can see and how much.

Children may poke their eyes or press on them with their fists or fingers. This may lead to misshapen and thinned corneas and a sunken appearance of the eyes. The level of vision remains stable once childhood is past. Vision may only be at the level of seeing light and dark or detecting hand motions. Diagnosis can be difficult and can be hard to distinguish what is vision and what is behaviour in an infant or child.

Vision Australia

Contact us today

Give us a call on 1800 275 753 to discuss your support needs with our Allied Health team, or send an online enquiry and we'll be in touch.

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How can CPL help?

Early Intervention Therapy

By knowing the signs of vision loss and acting early, you can get the help and support your child needs so they can reach their full potential. CPL's early intervention services can help support you and your family to develop strategies to support your child to reach their developmental milestones.


The NDIS Early Childhood Early Intervention (ECEI) approach supports children aged 0-6 years who have a developmental delay or disability and their families/carers. Support Coordinators can help you to navigate your first NDIS plan.

Independent living

CPL provides 24/7 Supported Independent Living services, and has a number of vacancies in accessible homes.

Employment and Training opportunities

There are a range of disability employment and training pathways for people with Leber Congenital Amaurosis designed to help you reach your goals.