Ben was diagnosed with moderate to severe sensorineural hearing loss at 4 weeks old, receiving his first pair of hearing aids at 6 weeks old.

It was a huge shock as we had no experience of deafness and we felt very confused and worried as a family.

We received fortnightly visits from a teacher of the deaf which was really helpful and reassuring. At a few months old we were told Benjamin had a genetic condition called Connexin 26, which was the cause of his deafness. At the time we were told his hearing loss was non progressive.  As months went on it became clear to me that Benjamin wasn’t picking up words and I felt he wasn’t sufficiently benefiting from his hearing aids, to add to this tests showed his hearing in both ears was worsening.

He was referred for a cochlear implant assessment and the team felt he would benefit from bilateral cochlear implants.

However, Benjamin was a borderline candidate and despite a long fight from his team, we had to fundraise for cochlear implants. We knew if we wanted Ben to speak then he had to have bilateral implants as soon as possible, almost 2 years had already gone by from the first referral. Thankfully our efforts were successful thanks to our media campaign and some very kind donors and finally, after almost two and a half years of fighting for it, Ben was switched on in May 2018.

Ben and his mum Joanna along with Auditory Verbal therapist Estelle appeared on BBC London and on BBC Radio London in December 2018 to share their story:

Auditory Verbal UK has been an essential part of our journey. I knew from research that as soon as Ben could hear more with the right technology, I wanted him to have auditory verbal therapy. It has given us the tools that we need teach Ben how to listen and talk. His teachers benefit from the fortnightly take home notes as well and it provides a brilliant structure from which all professionals involved with Ben can work from.

We see results week on week thanks to Auditory Verbal UK. There is no way we would have the knowledge of how to work on listening and talking without AVUK and I am sure his progress would be very different without them.

Benjamin actively listens now in all situations which means his listening and speech skills are improving day by day. Without the skills that AVUK have taught us as parents, the way he is listening in each and every situation wouldn’t be happening.

The team are so kind and I remember our first session feeling worried as it had been a battle to get Ben fitted with the right technology to enable him to hear speech. But when we walked through those doors I felt a sense of hope and understanding. There was no “maybe he won’t” or negativity, it was “he can and he will”.

“There aren’t enough good words to say about the work you all do. Thank you so much and we are glad we are on this journey with you.”

From the first session I could see his listening skills flourish and auditory verbal therapy clicked with him from day one. I had structure in between sessions knowing exactly what to work on and how and it no longer felt like climbing a mountain as we were doing it in building blocks.

Seven months on from our first session we are so happy with his progress. Working with your child and Auditory Verbal UK is hard work, it certainly isn’t the easy option and it requires focus and determination but the results speak for themselves.

The bursary has helped us access Auditory Verbal UK and without it this may not have been possible.

Auditory Verbal UK are an essential part of Benjamin’s life. Without them I am not sure where we would be. At every session each speech sound is even monitored so when we see our audiologists, mapping is tailored so that he can access every speech sound that his auditory verbal therapist feels he could be struggling with.

This close attention to his progress is a result of extremely knowledgeable therapists who are so amazing at what they do.

- Joanna, Ben's mum