We provide a friendly and considerate ear to parents who need advice or just someone to talk to seven days a week. We have a online network support forum on Facebook where families can be put in contact with those in similar circumstances as themselves, ask us questions or share stories of their children’s prognosis and progress. This is a private Facebook profile that you have to request to join on the link below and send us a letter of diagnosis via messenger before you can be added. We also have a Facebook like page but this is for general updates and supporters to follow. We are here to answer all your questions and support you during times of struggle . We also have a team of parent ambassadors witch a huge knowledge base and personal experience on hand to provide information to you . Whether it be advice on conditions, worries of upcoming procedures, equipment , transition to adult services , guidance on entitlements , education issues , palliative care, social isolation or just that its a bad day , we are here to help so please join our community because together we are stronger.
Please click on the link below and add us a friend.