Raising £60,000 for Lola's urgent Cochlear Implant surgery

GoFundMe to raise £60,000 for our deaf baby Lola to access sound via Cochlear Implant surgery.

Lola was born deaf with neural complications due to cCMV (congenital cytomegalovirus). CMV is the #1 non-genetic cause of birth defects and hearing loss globally, yet hospitals fail to screen pregnant women in the UK. cCMV has turned our world upside down in so many ways, and left our daughter disabled for life as she fell into the unlucky 1/200 babies born with the virus.

Within hours of receiving the news that Lola was deaf, we self-diagnosed Lola with cCMV through online research, leading to a tidal wave of further health concerns and the most gruelling 7 months of antiviral treatment. Since Lola was just 3 weeks old we have worked relentlessly with experts across the globe, spending tens of thousands of pounds at over 100 hospital appointments, challenging archaic medical guidelines and fighting insurance policies to try and gain access to the medical care that our baby urgently needs.

Cochlear Implant surgery is a miracle for deaf children. It will provide Lola access to synthetic sound to hopefully enable the development of verbal communication and therefore the ability to build relationships in a hearing world.

It has been strongly advised to be done as close to Lola's first birthday as possible, when her brain is in early pre-lingual development and most likely to accept this technology.

Unfortunately, UK guidelines are the worst in the Western world with regard to cCMV testing and also in offering access to Cochlear Implant technology for those affected. Shockingly, her medical insurance policy is also void, as she was born with this disability (congenital).

So sadly, despite pushing every angle for support, for almost the entirety of her life, we have finally lost our fight and can only proceed with private funding, despite overwhelming evidence that this is a critical intervention for her.

The complex surgery comes with an huge initial cost of £60,000, and will be followed by a very long process of rehabilitation, therapy and then requires upgrades to the technology every 5 years.

We strongly believe that families raising a child with disabilities, having their lives already turned upside down with the physical and mental load, should not have to face all of these further financial burdens alone. For that reason, we are turning to our extended network in the hope that we can reduce the impact on ourselves and our immediate family, to allow us to focus on the other aspects of her care, which will continue for a lifetime.

If you are able to donate, share or fundraise for our daughter, we would be forever grateful. We hope beyond everything, that Lola will be able to thank you herself one day, once given the gift of sound via cochlear implant surgery, and the chance to develop speech.

Importantly, we hope to raise awareness of cCMV, to encourage the UK to implement screening during pregnancy for the #1 global cause of non-genetic disabilities and hearing loss in newborns. Please sign and share this petition to ensure that hospitals improve their pregnancy care in line with other western countries like Greece, Germany & France who educate and routinely test pregnant women for CMV, which impacts 1 in 200 babies.