• Could you be a part of the next hearing loss breakthrough? 

    I am collaborating with Sano Genetics to let you know about an opportunity to learn more about genetic hearing loss and receive notifications for upcoming research opportunities.  

     As part of this new opportunity, families may be eligible to access:

    • no-cost, non-invasive genetic testing (if eligible)
    • email notifications for relevant research opportunities
    • expert educational materials about the genetics of hearing loss 

     
    We’re helping build a community of people interested in learning more about genetics of hearing loss, genetic testing, and relevant clinical studies.  Follow the link below to find out more.
     

    [FIND OUT MORE] 

    We’re committed to creating more options for people born with genetic hearing loss. Follow the link below to sign up.
     

    [SIGN UP] 

    How will my child’s data be protected?   

    Data security is Sano’s top priority and, if you choose to upload it, your data will be stored on Sano’s secure, encrypted and wholly owned servers. You can find out more about what they do to keep your data safe by clicking the button below. 

    Thank you, 

  • The end of an era…..perhaps

    Hello all.

    It has been a dreadfully long time since we last posted here. Life is very busy these days; three children at School and a business to run. I don’t flatter myself that people wait for the latest update on Alice and Ollie but I have felt something of a sense of duty to continue their stories.

    I have often wondered when I would stop. I always said it would be at the point Alice caught-up with her hearing peers and, bar the daily charging of batteries and a few other small concessions, her hearing troubles needed no longer be something we talked about. That plan came and went with Ollie… Ollie is, of course, another story but he is ploughing along and never stops talking. Am I bad for wishing he would shut up sometimes?

    Lots has happened in the past six months, or so, since we last updated the blog. Alice and Ollie have gone from strength to strength, the sky really is the limit for both of them. They have been the stars of a short film made for a charitable foundation – The October Club – whose support of Auditory Verbal UK has been and will be game-changing in allowing hundreds, if not thousands, more children to access AVT in the UK.

    Our Facebook Group has nearly 600 members now from all over the world; a superb community of people who come and go often joining in a time of confusion and despair and then disappearing again as their little-ones take positive steps and life returns to ‘normal’.

    And that, my friends from all four corners of the globe, is the crux of it. What is normal; what does it even mean? I have to admit that when we started this adventure all we wanted was for Alice to be ‘normal’ whatever that was. But, of course, Alice is just Alice, the same as Ollie is just Ollie. My beautiful, remarkable, children who fill me with pride and despair all day every day. Perfect children one and all.

    Alice’s hearing loss never has and never will define her; doubtless Ollie will follow suit.

    So where does that leave us?

    Telling the story of two remarkable children who deal with the trials of every day life with the same vim and vigour as every other child. They sing, dance, laugh, cry, shout, scream and bring joy to everyone they meet. You’ll not find a prouder dad than me.

    We never set out to offer advice on navigating the crazy world of ANSD. The world is vastly different to the one we joined nearly seven years ago. There is much more information at hand and technology continues to make the world a smaller place. We chose a path for our children and, even through the toughest of moments, our unerring faith that we were doing the right thing helped us get through. What was right for us and what has worked for our children may not be for everyone. We have always valued every different decision that parents make for their babies. All I can say is that Alice and Ollie are proof that there is a bright light at the end of, what can be, a very dark tunnel. It will always be alright in the end whatever the outcome.

    Love your ANSD children with all your heart. Choose a path and give it everything you have got. Never take no for an answer and remember, when the chips are down, how much your little ones need you to be strong for them.

    I wish you all the best of luck and do stay in touch.

    I’m not sure there’s much more to say than that…..

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