National Reyes Syndrome Foundation UK

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Life After Reye's Syndrome or a Reye-Like Illness

Dealing with disability

Discovering that your child has a special need or disability is probably one of the most devastating experiences that a parent will live through. The feeling of isolation - both physically and emotional – can often be acute. However, in time it will be found that some of the pain can be relieved by sharing thoughts and fears with other families in a similar situation.

Although brain damage is not reversible, it is true that much progress is possible. Parents must remember that their child has the capacity to grow and change, and that he or she must be given room to do so. Treatment options should be discussed and when a decision is reached it can hopefully be supported by all members of the family. It is very important that a sense of balance be reached and maintained by the family as soon as possible.

The local authority social services department can play a vital role in assisting the family. The Children’s Act 1989 gave the local authority the lead for providing services to children with disabilities, but parents may be dealing with the local education and health authorities as well.

Many voluntary organisations also exist to support families in their search for information and service provision.