My daughter, Ada, was born with little red dots all over her body. It took a few weeks to find out, but the reason was that she was born with a CMV infection. 

Ada having CMV meant that she didn't have the easiest start to life. She was put on a nasty anti-viral medication for 6 months to hopefully slow the viruses progression and limit any damage to her body and development. 

Left unchecked CMV can cause a number of complications in newborns, including hearing loss. Unfortunately the medication was slightly too late as Ada failed her newborn hearing screening tests. After further tests it turned out that Ada had mild to moderate hearing loss which my wife Tilly and I were relieved about - things could have been much worse. Ada was fitted with hearing aids, which she hated wearing but they looked so cute!

 Unfortunately Ada didn't really get on with her hearing aids and they didn't help with her hearing. A year or so down the road (after many more tests!) we found out that her hearing loss had progressed due to the CMV. It was now severe to profound.

Although she was quite old at the time (2), this new diagnosis meant she was now eligible for Cochlear Implants. This was a really tough decision - choosing something so important for Ada, something that will effect her whole life was extremely difficult. 

In the end we choose for her to be implanted with Kanso 2s (made by Cochlear), Cochlear Implants. They are actually really amazing devices.

Ada had her operation on the 29th Jan 2021. Everything went really well with no complications. Due to the pandemic, unfortunately only my wife, Tilly, was able to be with Ada in the hospital. That was hard. Not being there for her has been difficult to come to terms with.

The next day (my birthday!) was a long one, she wasn't discharged for ages, but early evening, finally she was home. Still a little wobbly from the anaesthetic (it was actually quite funny), a new hair-do and some pretty grim cuts behind her now sticking-out ears. 

'Switching on' was a few weeks later and ever since we've been trying our very best to make sure Ada wears her Kanso's as often as possible, so she can learn how to hear. 

Importantly - we have also learnt that hearing isn't the only way to 'listen'. Sign language is vitally important to communicating with Ada, in fact it's the only way we are able to communicate with her at the moment. Despite the operation and the CIs, BSL may very well be the language Ada decides to use primarily. We would fully support her doing that and help her in whatever way we can - Tilly already has her Level 1!

It's worth noting that hearing loss has by no means held Ada back. She is a super cute, amazingly happy, infuriatingly curious and aggressively affectionate little girl. Hopefully she'll be starting nursery later this month and a whole new world will open up to her as she begins her formal education. 

The NCDS has been there for us throughout all of Ada's journey. They have offered advice and support wherever and whenever we have needed it. Only today Tilly was speaking to an advisor about Ada's EHCP and supplementing local support. 

They are an amazing charity. Running the London Marathon this year is my way of paying them back, doing my bit for Ada and all kids in the UK with hearing loss. Please help if you can - Thanks, Sam.