Viewing 4 posts - 1 through 4 (of 4 total)
  • #170962
    Becker muscular dystrophy

    my 4 year old son got diagnosed with
    Becker muscular dystrophy my head up my ass at the minute am just wondering what will happen now I don’t know if am coming are going

    Amc
    Participant
    Posts: 0
    Joined: 10/01/2019
    #171698
    Reply To: Becker muscular dystrophy

    Hi Amc

    I cannot begin to imagine how you are feeling as a parent finding out a diagnosis. There is such a lot to process and I’m sure you have many questions at the moment. My parents must have gone through similar when I was young. I am now 40 and have a type called Ullrich CMD

    There is support out there and we will do our best to signpost and support the best we can.

    I don’t know whereabouts you are or if you are being seen at a Muscle clinic. A good place to get practical information and help navigating things is via your regional care adviser.

    Here is a link to the care adviser contact details by area

    Give yourself time to digest everything, give your boy a big hug and please feel free to ask questions or share your thoughts.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #181391
    Reply To: Becker muscular dystrophy

    Hi,I’ve not logged on in a while I suppose I have buried my head as my son was diagnosed last January at the age of 6 with BMD & now he’s turning 8 on Monday & his condition is classed as stable but 4 some reason I have recently started 2 get really anxious about it again like I did when he was 1st diagnosed,I was relieved it wasn’t DMD & was told this was a much milder form of MD although Thomas has some days where he can’t walk & now he’s having trouble with his arms it’s sad 2 watch but he’s such a happy boy & don’t let it phase him at all so I’m trying 2 b positive

    Lorrainemac
    Participant
    Posts: 0
    Joined: 21/03/2018
    #181472
    Reply To: Becker muscular dystrophy

    It is indeed a difficult time for any parent trying to cope with a situation like yours. I went through it with one of my sons when he was diagnosed by FHSD. Perhaps made a little easier as I was diagnosed at the same time. Nearly 25 years on he is a very successful IT person who can build, repair and modify computers as well as create websites and write code for apps. A far cry from or worries at the time as to what would become of him.
    But your last sentence sums it up. You say he is a happy boy which does not let these changes phase him, but I strongly suspect that is because you are being positive, even if inside your brain is tearing itself inside out with concern and worry. It is what parents do, and clearly you are doing it well in supporting him. You will find a way together and give him a great future.

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
Viewing 4 posts - 1 through 4 (of 4 total)

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