Content for Families, Carers and Professionals

My CDKL5 Journey

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In 2014 CDKL5 UK were awarded a National Lottery grant from the "Awards for All" programme.  The project title was "CDKL5 Education" the grant was to cover the re-design of our website, but also for a series of educational resources.  One such resource was the "My CDKL5 Journey" folders.  The folders resemble a health and social care passport.  It contains information about the disorder, the symptoms and allows families and carers to write when each symptom appeared and age at onset, information about the child, their diagnosis', their likes an dislikes, how they communication, their seizure plan and seizure logs and much much more.  We hope the information contained within the folder and that which families add will serve as a natural history of the child, which can be carried around with them when they are admitted to hospital, go into respite or even school.12243100 1000277210010518 1056132315899195508 n

These folders have been sent to all families which connect on facebook and are available at present to all children and adults living with CDKL5 Disorder in the UK and Ireland free of charge.  The feedback which we have been given has been very positive and one such review only last week from a family which said "Had the palliative nurse round today to give us the palliative care plan, including our wishes for her when needed. Told her I would put it in the CDKL5 folder, and showed it to her and she was extremely impressed. Said it was a perfect layout and a fantastic idea. Thank you again".

The contents will be added to over the coming months, to include further information about health and social care, as well as transition to adults services.  The logs which are contained within the folder are in the process of being reproduced so families and carers can have additional copies to maintain the standard of the folders.  If you are caring for a child or adult with CDKL5 Disorder and you would like one of these folders then please contact me at



  the national lottery; my CDKL5 journey