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Easy Read DMD for children with DMD

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  • February 9, 2022 at 8:54 am #202417
    Easy Read DMD for children with DMD

    I am the Social Worker for twin 9 year old boys with Duchenne’s MD. I am trying to help their mother and am looking for a way of explaining to the boys their condition. They have learning disabilities. The local hospice who I thought would support with this type of thing have declined my referral saying they are not medically unwell enough yet.
    Would anybody in your community already have a Social Story, or something in Easy Read version which other parents have used in the past please?
    This would be very much appreciated.
    Many thanks, Tracey

    Tracey Strudwick
    Participant
    Posts: 0
    Joined: 09/02/2022
    February 21, 2022 at 6:59 pm #202424
    Reply To: Easy Read DMD for children with DMD

    Hi Tracey.

    I had a google and this came up:-The abilities in me: Duchenne Musuclar Dystrophy Paperback – 7 Dec. 2021

    For parent peer support maybe try on Facebook for
    Pathfinders Neuromuscular alliance and Action Duchene.

    Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    February 21, 2022 at 7:02 pm #202425
    Reply To: Easy Read DMD for children with DMD

    You could also try calling MDUK and see if you can be put in touch with the Family care support nurse for your area.

    Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
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