Befriending

  • Four adults talking while a toddler sits on the floor playing in front of them

    Jenny, Elly, Susan and Chris discuss WAGR/11p deletion syndrome while Tara, who has it, plays on the floor

    Do you want to talk about aniridia with someone who’s ‘been there’?

  • Could you give such a person support?

Our befriending scheme seeks to link people together who have experience of aniridia.  Examples of people using the scheme include:

  • a family with 2 children under 3 years old all with familial aniridia
  • a couple with a 6 year old who has sporadic aniridia
  • a 60 year old with sporadic aniridia who’s sight has deteriorated
  • mum of a new baby that has sporadic aniridia – read her account of having a buddy .

If you would find a buddy helpful, email befriending@aniridia.org.uk. Tell us some details about yourself and what you expectations are. You must also be a member of Aniridia Network UK.

We will then use our membership database to look for a match for you. We will contact any potential buddies and once we have a confirmed their willingness, we will pass on the relevant contact details.

To give you a flavour, here are profiles of some of our members who have offered to be a buddy:

  • I have 3 boys and one has sporadic aniridia and glaucoma, he goes to mainstream school and has a full time assistant to help him. I am a full time mum at the moment
  • I have congenital aniridia which has affected three generations of my family. I have two children, one has aniridia. I have a guide dog. I enjoy bowling, meals out and the countryside.
  • I have two sons, the youngest has sporadic aniridia and has completed his GCSEs. I am an engineer and my wife a teaching assistant. As a family we are into scouting.

We’ve have a number of families who want aniridia buddies but who have difficulties with English – making it harder to find suitable people who can help.  If you speak another language and are willing be a contact for such a family please get in touch with the details.

Lyn

Lyn, Befriending Scheme Coordinator

Lyn is the Befriending Scheme Officer. As a mum to grown up son with sporadic aniridia she says ‘It has been extremely rewarding to be able to link people up and I know from my own experience that having someone to share your thoughts with is invaluable. So thank you Mary for that support 30 years ago!’

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3 Responses to Befriending

  1. Pingback: A parent’s experience of our befriending scheme | Aniridia Network UK

  2. Pingback: Attending your first conference – it will be more positive than you think | Aniridia Network UK

  3. Pingback: Attending the Genetic Alliance Conference 2017 | Aniridia Network UK

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