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Viewing 7 posts - 1 through 7 (of 7 total)
  • June 23, 2023 at 12:23 am #202950
    Hello

    MY NAME Is Sadia and my child has been diagnosed with Duchenne muscular dystrophy. He has been identified to have a exon 51 deletion.

    Sadia
    Participant
    Posts: 0
    Joined: 22/06/2023
    June 24, 2023 at 12:48 pm #202951
    Reply To: Hello

    Hello and welcome to the forum.I apologise for the delay to contacting you but I have been away for treatment.It would be really interesting to know a few more details, for example about his age, and if you are getting the right support.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    June 24, 2023 at 12:57 pm #202952
    Reply To: Hello

    His age is 4 years old

    Sadia
    Participant
    Posts: 0
    Joined: 22/06/2023
    June 24, 2023 at 1:04 pm #202953
    Reply To: Hello

    So send me email I’d so I’ll send you all my child’s reports..

    Sadia
    Participant
    Posts: 0
    Joined: 22/06/2023
    June 26, 2023 at 12:18 pm #202954
    Reply To: Hello

    I was just wondering if he is under the care of a neurologist, and physio. It is important to make sure that he is monitored and helped , and sometimes it is hard t find the right help.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    June 26, 2023 at 1:04 pm #202955
    Reply To: Hello

    There is no cure in UK

    Sadia
    Participant
    Posts: 0
    Joined: 22/06/2023
    June 28, 2023 at 1:28 pm #202959
    Reply To: Hello

    There is no cure anywhere in the world at the moment but there is exciting work being done on many research fronts. Please do remember that.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
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