He has diagnosed Aoife with CCI (Craniocervical Instability, is a structural instability )it means Aoifes skull is slipping backwards and forwards to a largely greater degree than it should, in essence her head is struggling to hold itself up. AAI ( Atlanto axial instability at the vertebrate C1, C2 and allows the head to rotate left & right)unfortunately for Aoife this movement causes this joint to dislocate both sides. She also has Subaxial instability, this is further instability from C3 to C5. Dr Gilete was very concerned about episodes Aoife has had of total paralysis, where she has been unable to move except for her head, he explained this was because her vertebral artery ( main artery in the neck) is being kinked & this is a very dangerous situation. Aoife also has both brain stem compression & spinal cord compression & without this surgery Aoife will continue to deteriorate & any damage will be both permanent & irreversible. It has been explained to us the serious risk to Aoife were she to have a fall or an accident, as you can imagine that reality does not bear thinking about. Dr Gilete has proposed surgery from C0- C5. So her neck will be fused from her skull to C5, given that there are only 7 vertebrae in the neck this is a huge amount of fusion & will be not only be life saving but life altering for our daughter who is facing this at just 14 years old. However, we have no choice but to take this route as there is simply no alternative.
We are truly overwhelmed by the task in front of us both in terms of this surgery, Aoife and I being away from home for at least a month & raising the money needed for it. This surgery is not available to EDS patients in either Ireland or the UK. Patients either must travel to the States or Spain. We can apply for help from the government in the form of the cross border directive, it would only be a drop in the ocean towards the overall costs & it is by no means certain we will be approved but I am definitely going to try. In all the trips we have undertaken with Aoife we have relied on the support of family & friends & our local community. I think its unacceptable that the state has ignored the plight of not just our daughter but the countless others who are forced to travel when things become more complex. In 2018 it should not be the case that family, friends & communities are the ones providing support in lieu of the state!
We are going to need huge help in raising the funds needed. I estimate we will need €100,000 to cover surgery, flights, accommodation & have a small contingency in place in case of further surgery being required or any unexpected complications occurring. I am appealing for help in launching a campaign to help our daughter. We simply cannot do this on our own. If anyone is willing to form a group to help us or indeed have any ideas or would like to organise a fundraiser or help out in any way, please contact me. We have been blessed by such kindness & support in the past. This absolutely is the biggest challenge we have faced as a family & we are heartbroken for our precious daughter, EDS has robbed her of so much & it's been an immensely difficult road we have traveled but we know we cannot let her down now. We would be truly grateful for your continued support, now more than ever. Thank you.
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