15-year old son has Becker Muscular Dystrophy

juliejack
juliejack Online Community Member Posts: 3 Contributor
edited September 2016 in Families and carers
I have a 15 year old son who has Becker Muscular Dystrophy. It's a degenerative condition causing muscle weakness and wasting. I wonder if there are any other people on here who's child has a similar condition?

Comments

  • Lauren_Trailblazers
    Lauren_Trailblazers Online Community Member Posts: 2 Listener
    I recommend you check out www.musculardystrophyuk.org 

    They can put you in touch with individuals who have the same/similar conditions.

    Also your son may benefit from joining their young people's network where he can meet other's with muscle-wasting conditions https://www.facebook.com/groups/mdctrailblazers/ 
  • juliejack
    juliejack Online Community Member Posts: 3 Contributor
    Thank you, we are already involved with MD UK. I will let my son know about the young people's network.
  • JadeB
    JadeB Online Community Member Posts: 62 Contributor
    Hi @juliejack I have met many young lads with MD being a support worker. I work in many places one of which is trellor college. The young lads I have met are all amazing and deal with thier condition very well as do the carers that look after them. Wish you all the best x
  • juliejack
    juliejack Online Community Member Posts: 3 Contributor
    Thanks Jade xx
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    Hi @juliejack how are you getting on? Have you managed to meet any other parents of children with Becker Muscular Dystrophy?

  • Clare123
    Clare123 Online Community Member Posts: 1 Listener
    Hi  Julie .I have a son 28 with MD type Facioscapulohumeral. He has similar conditions .Most of his muscles have deteriorated and he's just having to start to use a wheelchair to get around.
  • LDNUMBERPAIN
    LDNUMBERPAIN Online Community Member Posts: 21 Connected
    Hi My son now in his 30's has advanced Becker (BMD) and has been wheelchair dependent for many years. He is now in 24/7 care with an excellent support team, unfortunately  his wheelchair does not get the same TLC because the NICE guidelines only apply to medical care quality and as a result he has direct responsibility for maintaining it at his own expense. As many wheelchair users know a common problem is that the electrics are sensitive to cold damp conditions causing a very irritating cut out.

    Being unable to resolve the problem the company that usually upgrades his wheelchair decided he could no longer use his own hand control outside his house (inside the temperature is controlled) and pottering around his fully adapted home does not overload the electrics so he is now totally dependent on his care team if he wants to leave the house for any reason, makes no sense of what the PM meant by giving everyone more control over there own lives.
    LDNUMBERPAIN
  • linzi08
    linzi08 Online Community Member Posts: 1 Listener
    edited January 8

    hi, my son has beckers also, and like you I am desperate to reach out to parents whose sons also have this disease. My son is turning 10 in feb, he is lonely, he massively struggles as he can’t keep up with his peers and struggles due to this. Please get in touch if you want support, we are learning as we go but I am more than happy to offer support and friendship. My email is [removed by moderator]

  • Mary_Scope
    Mary_Scope Posts: 3,562 Scope Online Community Children and Family Specialists

    Hi @linzi08 and a warm welcome to the community from me!

    I'm sorry to hear your son is feeling lonely, that must be very hard to see as his parent.

    Have you explored your Local Offer or your local parent carer forum before? Often if there is any social groups, activities or clubs for disabled children as well parent carer groups and coffee mornings for parents, they are advertised on here!

    Just letting you know I've also removed your email address from your comment to keep you safe and to stay in house rules. Hope that's okay.

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