To be told that a child has an inherited condition and is faced with sight loss is traumatic for anyone, and this heartache only compounds the problems faced by the young person who has been diagnosed.
There is additional support to help you deal with the issues you might face as a parent of a child with retinitis pigmentosa. This support is available from a number of sources including healthcare professionals, educationalists, other professionals, support groups and charities.
You will need to think about telling your child, the rest of the family, education and development, practical issues, finances, and lots more. These next few pages will help you reach the people that can help and provide you with some guidance.