We have been inundated since the programme about ANSD ran last week. Thousands of people have visited our little blog and we have had emails, messages of support and calls from all four corners of the globe.

We are humbled and astounded.

As I said to someone yesterday – we don’t have all the answers, but we are happy to point Parents in what is hopefully the right direction. In a world where the decisions you make based on ‘expert’ opinion have such far-reaching consequences, it is so important sometimes just to be able to talk things through with Parents who have been on the same journey, free of professional input or dogma.

That’s why we started our forum last year and why we have put together the Parents network. The latter is already proving invaluable to some new families on the journey. The forum was, sadly, less successful, but I suspect that is down to us.

We also have a Facebook group that we set up last year. We are not trying to detract from any of the other groups and forums that exist, but I can’t help thinking that there is still room for more, else we wouldn’t get so many emails and calls (which, of course, we are always happy to receive). So please do come along and join the group – say hi and ask some questions to get it going – I really hope it works. Do also pass it onto your friends and acquaintances.

By Parents for Parents, that’s my moto….The blog will also update on there from now on.

Parents of Children with ANSD Facebook Group

2 responses

  1. Thank you for allowing your family to be apart of See Hear last week. As grandparents of a profoundly deaf little girl with ANSD ,we found it both informative and helpful.It was a joy to see how well Alice is doing with the help of the Cochlea implants and hopefully Oliver will do equally well. We are also a hearing family and have had very little exposure to children with hearing loss….it seems quite a steep learning curve ! All best regards to you and your family Susan Barker

    Sent from my iPad

    • Susan

      It is a pleasure to share our story with so many others and to, hopefully, help others navigate similar journeys.

      Do come along to our Facebook group so we can stay in touch.


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