Ownership of Your Child's Care


Neuronopathic Gaucher's News Contents
Gaucher's News Contents


Dr Ashok Vellodi completed the conference programme with a talk on ownership of your child's care.


Prior to your child being diagnosed, the family unit consists of you and your child. However, once your child is diagnosed with a rare genetic disease, such as Gaucher disease, that limits life and for which there is treatment but no cure, the world you live in becomes totally different.

You suddenly find that your small family unit now includes hospitals and numerous other professionals who will all be alien to you in the beginning.

Your initial feelings of oppression and, even in some people, clinical depression will, however, slowly recover.

It is important at this stage that you seek information from sources such as hospitals, other parents, the Internet and support groups such as the Gauchers Association. Such information will help you to make informed decisions.

There are three models of decision-making about your child's care. These are:

However doctors and families may shift backwards and forwards between these models, depending on the stage of illness and other factors such as development of new drugs.


Neuronopathic Gaucher's News Contents
Gaucher's News Contents

Source: Gaucher's News February 2000. © Copyright Gauchers Association 2000