• Chance4Charlie

***Update*** Surgery date : 9th May

***UPDATE****UPDATE****UPDATE****UPDATE*****UPDATE**** We have raised enough now for the initial surgery, flights and accommodation. Thank you, you are all amazing and we could not have done it without you. We are asking that the fundraising doesn't stop now though, as I have been told I may need a second surgery with the same surgeons a few weeks after the initial surgery. As my jugular veins are fully collapsed and not reinflating to drain blood from my brain causing severe intracranial pressure, this might improve after the initial surgery, but if it doesn't after a few weeks it will need immediate surgical intervention. We have asked for a quote for this and are still waiting, unfortunately, it is not covered by complications insurance as its a pre-existing condition that was discovered in January. If I do not need this surgery and we go above our target I will use some of the money for recovery costs (physio, medical equipment, follow up appointments with the surgeons) And if we raise more beyond that I will either donate the money directly to other people in my situation in the UK as I am in a support group with many people fundraising, or if my recovery is going well I am planning on starting a charity to help people in the UK suffering from EDS with potential Cervical Medullary Syndrome access firstly a diagnosis, which is currently only available privately in the UK and then help them fundraise for appropriate treatment, whilst also raising awareness and working with groups who are already trying to affect change in the UK for these patients. As being a registered charity opens the door to large donations from companies, something Chance4Charlie has been unable to access, but if we started a registered charity we could access this for other people. There is a charity called just4children which does something similar for people under the age of 25 for medical help in general. So all the money raised will go to helping myself and hopefully others access treatment for Cervical Medullary Syndrome.

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