Every year, 12 to 17 of every 10,000 children are diagnosed with an illness and/or disability that threatens or shortens life. Of these families, 65% need emotional support alongside help with practical and social aspects of life while 10% of these families seek professional counselling.
Medical developments are good news but can result in long-term survival of children with extreme disabilities in a society that’s not adapted to meet their needs.
From diagnosis, families become immersed in the medical world. They have to learn medical language, understand treatments and medicines and have numerous in-patient stays.
The diagnosis itself is often life-shattering for each and every family member. This leads to stress and often difficulties in communication and with relationships. Without support or counselling many families suffer relationship problems and even family breakdown. Stress levels can be increased because of the huge number of people who suddenly become involved and communication with professionals is often experienced with difficulties.
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