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Hi, my name is Sophie

SRose Community member Posts: 1 Listener
My son has a rare condition called Dravet Syndrome. He is nearly 3 1/2 and finding he is well looked after in the healthcare side for his seizure control, but as a parent you get very little support in the development delay and SEN side if things that are very common in this syndrome. I’m joining communities such as this to help educate myself so I can fight for what He needs. And also hopefully help others! 


  • bg844
    bg844 Community member Posts: 3,887 Disability Gamechanger
    Hello @SRose
    Welcome to the community. Please have a look at the Coffee Lounge and join in with the discussions.
  • Tori_Scope
    Tori_Scope Scope Posts: 12,505 Disability Gamechanger
    A warm welcome to the community from me too @SRose :) It's great to have you on board!

    You're not the first parent we've heard say that, so you're certainly not alone in feeling that the support in that area is lacking. I'm sorry it's something you're experiencing. 

    You may be particularly interested in checking out the following categories:
    You may also be interested in visiting the following pages:
    What would you say the biggest barrier to getting your son the right support is at the moment?
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  • Jo_2022
    Jo_2022 Community Volunteer Host Posts: 298 Pioneering
    Hi Sophie @SRose! 👋 A friendly welcome to you on the community. Yes, it’s understandable that there is a lack of understanding and support for your son with SEN needs. We are here for you and it’s great that you are trying to help yourself. Take care 😊 

    Community Volunteer Host with a passion for human rights.

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.

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