Being told that your child has a devastating disease, is the worst news a parent can hear. Feelings of shock, anger, fear, helplessness, guilt and loneliness can be overwhelming at diagnosis. Please read the testimonies of some of our family supporters, and know that you are not alone. If you’d like to talk to other parents in this situation, email us and we will try to connect you to families with children of similar age.

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There will be good days and bad – times of joy and desperation – but these will level out as you start to come to terms with your child’s diagnosis. Remember to take care of yourself and keep your own health on track – with good sleep, activity, balanced nutrition and remember your own medical check ups. Counselling and other therapies are available and can enable you to explore your feelings – seek your GP's advice for this.

In time you will be able to seek financial support and grants to help you and your child. It is important to liaise with your local council who will be able to help you identify what support is available in your area.