(Read the update below or watch the video in the comments)

I am fundraising for lifesaving neurosurgery in Barcelona for my daughter Charlie.

Charlie has been severely ill for 4 years. After many years fighting for a correct diagnosis we now know that she is suffering from cervical medullary syndrome (brain stem compression) a rare, life threatening and extremely debilitating complication of Hypermobile Ehlers-Danlos Syndrome.

If left untreated the outlook is very bleak and Charlie will continue to deteriorate. The UK does not have up to date treatment for this condition, as a result patients have to seek out help from Neurosurgeons in either Barcelona or America.

We have had confirmation from Dr Gilete that Charlie's brain stem compression is advanced and she needs to have surgical intervention. We are taking Charlie to Barcelona on January 21st 2019 for more tests and for the surgeons to make a surgical plan. After this trip we will know how much the surgery and expenses are going to cost and how long we will have to raise it. We know that the minimum is likely £60,000.

I will be eternally grateful for any contribution made to help me save my daughters life.

All my love,

Lisa Headland.

Some donations are going directly into the Chance4Charlie bank account so for a more up-to-date fundraising total visit the website:

www.chance4charlie.com

To learn more about the conditions and the surgery, go to: https://drgilete.com/cci-eds/

****UPDATE****UPDATE****UPDATE****UPDATE*****UPDATE****

We have raised enough now for the initial surgery, flights and accomodation. Thank you, you are all amazing and we could not have done it withou you. We are asking that the fundraising doesn't stop now though, as Charlie has been told she may need a second surgery with the same surgeons a few weeks after her initial surgery. Her jugular veins are fully collasped and not draining blood from her brain causing severe intracranial pressure, this might improve after the intial 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 as its a pre-existing condition that was discovered in January.

If she does not need this surgery and we go above our target she will use some of the money for recovery costs (physio, follow up appointments with the surgeons) And if we raise more beyond that Charlie will either donate the money directly to other people in her situation in the UK, as she is in contact with many through an online support group or if she is recovering well Charlie plans on starting a charity to help people in the UK suffering with EDS and potential Cervical Medullary Syndrome to firstly access a diagnosis, which is currently only available privately in the UK and then help them fundraise, as being a registered charity opens the door to large donations from companies, something Chance4Charlie has been unable to access, but if we registered as a charity we could access this for othe people.