Calling all parents in the UK…

Over the past four years of blogging, we have been contacted by over 100 parents and families who are finding their way through the minefield of information and disinformation about ANSD.

We do our best to keep up and to help.

Alice’s Ears has had over 30,000 unique visitors and currently has around 100 unique visitors a day. Blimey!

In the UK at least, it can feel very lonely. We try to offer advice and comfort where we can, but what, at the end of the day, do we know? We can only share our own story (of which more will appear in the BBC programme on 24th October (tbc)). We also do our best to help the ‘scientists’ to further the understanding, diagnosis of and prognosis for children with ANSD.

With all this in mind, I wanted to ask you all a favour. If you would be happy to be included on a list (which we will keep) to offer your help to newly diagnosed families, could you send a note by emailing us through this link

I propose to keep a country-wide list that we can share with new parents who contact us. Hopefully then, parents can meet up and share their experiences – something we have been lucky enough to do with a good number of you.

In addition, if you are parents of newborns or very young infants with ANSD and would be prepared to join a research study at the University of Manchester (Oliver has already signed up – Alice was too old!) then we can put you in touch.

Help us to help others…..

Coming of age

I don’t think we ever planned to get here.

I’m not sure what we were planning, but we have spent the past two days recounting our darling Alice’s story to the BBC and it has really got me thinking.

By way of an explanation, the BBC have picked up on the ANSD story and have been working with us, Kai Uus, St. George’s Audiology and David Selvadurai to make a short documentary about ANSD and Alice and Oliver’s story. Wow. All I can say is thank you so much to Louise, Jane and Jean who made the whole experience so much fun and for believing in our story. We will let you know when the programme will be out. I hope it continues to further awareness of ANSD and to help answer the questions of parents who find themselves in our boat.

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Anyhow. This also got me thinking. We have now had so many emails through our humble little blog. We are touched every day by the families who thank us for sharing our story. We are so lucky we have got to meet so many of you. This is what got me thinking. In the UK at least, how would experienced families feel about volunteering to meet with new families to offer help and advice? Or would you be happy, at the very least, to share your contact details with us to share with others?

I met a doctor in a corridor at St. George’s today who I had never met before, but who knew Alice’s blog. We get over 100 hits a day. Facebook it is not, but we now feel a real sense of duty to make a difference to the ANSD world. What would you do?

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