polymicrogyria (PMG)

Heather85

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

Ami2301

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

• Coming to terms with your child's diagnosis
• Watch other parents talk about how to avoid feeling overwhelmed
• Mindful monsters activity cards - created by Scope
• How to talk to friends and family
• Supporting each other as parents
• Finding local support services

I hope these help, please let us know if you need anything else

Doris_Scope

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

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

@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.