Undiagnosed and rare conditions
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autism and cruden de vries 17p 12q syndrome

hayley3254hayley3254 Member Posts: 1 Listener
hay everyone im new to this group im currently going through a very difficult time with my youngest he had full globel delay and 2 deletions in his dna and it came up as cruden de vries syndrome 17p 12q

could someone tell me more alittle bit about it he hopefully with having all his  proffesionals already in his care he will get an early diognosis for autism too! i did read up on alittle about them having epilepsy with having CDV it makes me worry what his condition will bring he also has funny faciel features that come with the condition of CDV hes such a beautiful happy smily little boy IM SO BLESSED!!!

i also have my eldest oliver who has diognosed autism adhd spd and hypo mobility he is medicated 24 7 of 3mg INtunive hes a beautiful handsome lad full of character and so clever with his maths and memory

 i also have a little girl amelia who is 5 she has spd problems and slight autism tendencys she is beautiful and such a caring thoughtful little girl who loves playing with them both and understands what there conditions are and her own i live in the countryside in halsall and just feel so alone and isolated noone to go for a coffee with just be nice also to talk to people who just get it!xxx


  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    edited April 2017
    Hi @hayley3254 welcome to the community, I don't know anything about your child's condition but I had a quick google and found a support group on facebook that may help you connect with other families.

    You might also like the Parents and Carers category here, though your children may have different conditions and impairments, it can often really help to just speak to other family's who have disabled children.

    You mention feeling isolated, I wondered if you had ever seen Meetup? It's a website where you can find all different social groups in your area.  I know it must be difficult to socialise with kids but I thought it might be worth a look.

    Best of luck and I hope you enjoy using the community here.
    Senior online community officer
  • GeoarkGeoark Member, Scope Volunteer Posts: 1,375 Disability Gamechanger

    Hi @hayley3254 and welcome to the community.

    There is a fantastic charity called Special Kids in the UK. Despite its name the aim of the charity is parents peer support and while there is a huge range of disabilities among the children the experiences of the parents are often the same or very similar.  I know they have arranged away days and weekends away which have proven hugely successful.

    They do charge for membership, though most of the site is free, and currently asking for a £1 donation for lifetime free membership.

    From experience they were extremely helpful to me when things were at their worse with my daughter and myself. One thing I truly appreciated was their non judgement and frank advice. I never attended any of their events but know some great friendships were created on these.


    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

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