Theo is our beautiful blue eyed baby boy and everyday for the last 8 months old. I have told him how much I love him and he smiles back and me and I know he loves me too but he doesn’t hear me as he is completely deaf.
We have known since Theo was a week old that he was profoundly deaf and with the added complication of his deafness being classified as auditory neuropathy spectrum disorder aka ANSD (a rare and unusual deafness) . We were distraught on hearing this news but we hoped he would be eligible for a cochlear implant after we discovered hearing aids weren’t working for him.
We had the assessment for the cochlear implant on 22/12/14 following an MRI which showed his auditory nerves were hypoplastic (very thin) and had fused part of the way down the nerve . The assessment confirmed that the fusing of the nerve was preventing sound from ever getting through and therefore cochlear implants were not an option.
Then we heard of an Auditory Brainstem Implant AKA a bionic Ear and this is Theos only hope for sound, otherwise it’s a life of complete silence. If it sounds scary it’s because it is!
There are only a handful of specialist surgeons worldwide who are able to implant a tiny device into the actual brainstem where hearing is processed. An ABI will at a minimum give him Environmental Noises but with lots of therapy and hardwork maybe even speech.
We are seeking funds for Theo for the ABI itself, the mapping afterwards and the travel to and from all of the hospital appointments, anything you can give will be absolutely gratefully received no matter how small.
We estimate that with the cost of surgery (£60k for 1 ear), follow ups, flights and accommodation the total cost will be c. £90k for 1 ear. Theo will also continue to need intesive speech therapy until at least the age of 5 or 6 at a cost of c. £10k p.a.
Until Theo has had 1 implant we won’t know if a 2nd implant is worthwhile or not hence we are only doing 1 ear now.
Once we have raised enough funds we will continue to raise funds for other children and also for the NDCS and Audio Verbal UK and also promote deaf awareness