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.
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?
We would be happy to help if we can… We really enjoy reading about Alice and Oliver’s journey, ANSD is a tricky and varied path. We would have and still do welcome any help and advice.
Kate, mum to Billy (ANSD) and Grace, 4 yr old twins
Us too – let us know what we can do. Jo & Luke (parents to Max, ANSD – almost 4 years old)
If you come across anyone in Canada who needs a shoulder to lean on…we’d be delighted!
SHannon and Dacey (parents to Madeline 11, Ella 9 and Sadie (4.5; ANSD; micro preemie)
Shannon – I’ll add you to the list and gladly oint anyone from across the pond in your direction should we hear from them. Thank you so much.
Does anyone have a child who has been diagnosed at the age of 16? our daughter has and
apparently this is unusual, she is being considered for cochlear implants and we would love to
hear from anyone with experience of this
Brigitte, I don’t know any personally but there are a couple on the Facebook ANSD group. Alternatively, you could contact any of the specialists on the page on the site and they may be able to help.
In any case, I’ll do some digging and try to do my best to help. Keep in touch.
Could you let me know how to get onto your facebook please
It’s not our group – it is run by a chap called Dan Schwartz who also runs something called the hearing blog. You’ll need to pm him to get invited to join.
Thank you – Do you know what the groups called? cant seem to find him or it? Sorry to be a pain
Send me an email through the link on the home page and i can send you a link