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Hi @motherscuffer I dont think we have any parents with children with these specific illnesses and so I have asked on twitter and will share any responses back to you.
Hello I am 46 and I have dysgeneasis of the corpus collosum and I have managed to lead a fairly normal life, I have 4 GCSEs and a daughter partner and friends and have gone on lots of journeys of acceptance of the disability.i also play the piano and speak foreign languages and enjoy travelling, swimming and knitting