Back from Barcelona, what now?
Firstly we want to say how grateful we are for the donations and support so far. We are feeling truly blessed by all the love shown to Charlie and our family.
We got back from Barcelona yesterday. It was a tough but production trip. Charlie is exhausted, as she had many scans while we were there, some of which were very physically draining. There was also a taxi strike the entire time we were there, which meant using a lot of public transport which is extremely difficult for Charlie, we rented a wheelchair whilst we were there but pushing that around Barcelona (which is very hilly) was not easy.
In short Charlie’s whole cervical spine (neck) is very unstable. Her atlantoaxial joint, which is the joint of the top 2 vertebrae is extremely unstable. We knew before going to Barcelona that the joint subluxes (partially dislocates) on a rotational axis, so when Charlie turns her head side to side her vertebrae dislocate which is extremely dangerous. We learnt through a Cineradiography (a video X-ray in which Charlie moves her neck) that this instability is severe and it not only subluxes on a rotational axis but also on a vertical axis, causing her top vertebrae to move upwards and directly compress her brain stem.
So when Charlie is sitting upright for extended periods this subluxation worsens compressing the brain stem causing symptoms like vision loss, speech loss, extreme pain, loud ringing in her ears, difficulty walking or even thinking and so on. It has also on occasion caused her to stop breathing whilst sleeping and she wakes up gasping for air. It has also caused her to choke as she loses the ability to swallow. If left untreated it will worsen over time (the time frame is different for everyone) but over the past 6 months her condition has progressed quickly. If it were to worsen she would be at risk of blindness, seizures, paralysis and eventually it would be fatal. Even at this point if she were to have a minor accident without her neck brace on she is at risk of internal decapitation. (This is how her Neurosurgeon worded it.)
Therefore Dr Gilete has proposed a full cervical spine (neck) fusion. The surgery is extremely risky and afterwords Charlie would be unable to move her neck, which as you can imagine would be very disabling. However, this surgeon has amazing success rates and this truly is Charlie’s only chance to survive and there is the potential to regain a better quality of life. Charlie is 100% certain that she wants to go ahead with this surgery, she has done extensive research and is completely confident in her decision.
We are in contact with Dr Gilete’s assistant who will send us a full quote this week and we will update the funding information.
We now all need to start sharing her story far and wide. If you are able to put on an event, a coffee morning, do a sponsored activity, anything anyone is able to do we will be eternally grateful for any help large or small.
All our love,
Charlie’s family xxxx