polymicrogyria (PMG)

Heather85
Heather85 Online Community Member Posts: 1 Listener
edited February 2019 in Families and carers
Hi, we are parents of 2 children, our 4 year old daughter Jessica, & 16 month old Edward who was recently diagnosed with polymicrogyria (PMG). He is currently around a 5 month level developmentally & coming to terms with the diagnosis & uncertainty of his future is proving really difficult ? it will be good to hear from other parents of children with disability. We are in  Doncaster, South Yorkshire. Xx

Comments

  • Ami2301
    Ami2301 Online Community Member Posts: 7,877 Championing
    Hi @Heather85 welcome to the community! 

    Sorry to hear this, I am sure many parents within our community will be happy to get in contact with you to offer support. Here are some resources which may be of use to you
    I hope these help, please let us know if you need anything else :)
  • Doris_Scope
    Doris_Scope Scope Family Services Posts: 183 Family Services
    edited August 2024

    Hi

    @Heather85

    .  I know you have said in your post that you would like to speak to other parents of disabled children, but there is also support if you need it from a new Scope service. 

    I am a parent advisor for a  service for parents who have recently had a child diagnosed with a disability or impairment or going through diagnosis. This support is over a period of six weeks and we are there to support the parent with any emotional issues or practical support that we can offer. We have a link to a referral form and also a telephone number for you to contact - 

      or phone 0808 801 0510 or email navigate@scope.org.uk.

    I hope that we can support you if you feel this would be beneficial.

  • mariechivers01
    mariechivers01 Online Community Member Posts: 1 Listener
    Hi @Heather85. I am a mum of a 2 and 4 year old but it is actually my younger sister (now 32) who has polymicrogyria. I am living in Hertfordshire. Feel free to connect if I can help. I have recently set up polymicrogyria research website as I am a medical researcher and hoping to do more research and raise the profile of this condition: but on a personal level as a mum and sister don't hesitate to connect.

  • lizzy107
    lizzy107 Online Community Member Posts: 1 Listener

    @mariechivers01 hello

    I know it has been years since this thread but if you’re still around on here, I’d love to chat to you about your experiences and research.

    I’m a pmg mama living in Scotland with a science background, and the scholarly articles I’m coming across online are sending me down a bit of a pessimistic spiral.

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