My girls — Scope | Disability forum
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My girls

2girlsx
2girlsx Member Posts: 5
Hi just joined i have 2 daughters age 1 and 2 recently diagnosed with genetic disorders. 1 has a duplication and 2 deletions on chromosome 15. And my other daughter same duplication. One with the deletions is being investigated for Angelman syndrome. As her delays are much worse had some pretty low days. Hoping theres others out there that might have similar i would love to chat to others.

Comments

  • Mickey
    Mickey Member Posts: 16
    Hi, thought I'd say welcome to the community. Have you managed to find any local support?
  • 2girlsx
    2girlsx Member Posts: 5
    Not as yet we haven't taken 2 months just to get appointment to talk results over with paediatrician.
  • 2girlsx
    2girlsx Member Posts: 5
    Thankyou for the welcome
  • Mickey
    Mickey Member Posts: 16
    The timescales can be frustrating. There was something up on Facebook from the main Scope account earlier today about a section on the community earlier - about rare conditions etc? Would that be of interest to you?

    Have you had a look at the Face 2 Face page for some local support?
  • 2girlsx
    2girlsx Member Posts: 5
    Very frustrating just been told another 2 months to wait as they want to see both my daughters at same time. Yes that would definetly interest me and no haven't heard of face 2 face before.
  • Mickey
    Mickey Member Posts: 16
    Very frustrating. How are your daughters getting on? How are they affected and who is currently involved (physiotherapy, that sort of thing)?

    This was the link on Scope's facebook page - https://community.scope.org.uk/discussion/29000/raising-awareness-of-the-person-behind-the-condition

    This is the link for Face 2 Face - http://www.scope.org.uk/support/services/befriending/about-face-2-face
  • 2girlsx
    2girlsx Member Posts: 5
    My 2 year old Olivia has paediatrician and that's it for her. She had speech therapy though so now giving her 6 month break to see how she does. With her she has autistic traits. Hand flapping, speech and social problems. Doesn't sleep for long or able to follow instructions etc. My youngest Emily has her mri results now so 2 deletions, 1 duplication and right perisylvian polymicrogyria. She uses wheelchair and other equipment too. Under paediatrician, physiotherapy, OT, portage, orthotics, opthamologist. And soon as will geneticist and neurologist. She's just starting with crawling. She's non verbal, still on pureed good and baby milk. Can't stand or walk. Autistic traits she's very sensory. Jabs her chin, bites her hand and fingers. Just starting to grab toys.
  • OlliHannah
    OlliHannah Member Posts: 30 Connected

    I agree with Mickey that Scope's Face2Face service would be something you should consider as the befrienders are all parents of a child with a disability so understand what you're going through at the moment.

    You may also want to consider calling Scope's helpline on 0808 800 3333 as Scope has local Information & Advice Workers who may be able to support you with some local information about services & support

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