444
444
12

Aoife's surgery fund

€125,309 of €100,000 goal

Raised by 602 people in 11 months
Created February 19, 2018
I just wanted to update you all, after our recent travels to Barcelona in January to meet with Dr Gilete, neurosurgeon with Aoife. He was a lovely man, very kind & took his time explaining Aoifes images in detail to us & examining her.

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.
+ Read More
Update 10
Posted by Susan Sage
23 days ago
   Share
We have been so looking forward to this Christmas and celebrating the day together with Aoife the other side of surgery.

She's doing well, fatigue is still an issue and she still has EDS and the secondary conditions associated with it. Thankfully though we do see improvements to her overall health and for that we are so grateful.

This past year has been an incredible journey. A journey I viewed initially with a very negative mind and apprehension turned out to be one of real positivity and completely life changing for all the right reasons. The goodness of our communities and indeed individuals even further afield carried us in ways I can never quite articulate but I firmly believe that with so many rooting for Aoife, it genuinely helped her and us get through what was a very tough time in our lives. It's been an absolute privilege to see how good this world really is, how we can support and help each other and how even simple gestures can mean so much. When people come together, great things happen and Aoife is proof of that. Thank you one and all and best wishes for a very happy Christmas from our house to yours. Xxx
+ Read More
Update 9
Posted by Susan Sage
3 months ago
   Share
I post updates on Aoife's Facebook page but I have been correctly reminded that I had neglected to update her GoFundMe account. Apologies, for that. Aoife had her surgery on 27th September. It was horrendously nerve wracking waiting to hear how everything had gone and being able to see her in ICU. Everything thankfully went very well. Aoife has been an incredible patient. She has shown strength, courage and a positive attitude that belie her young years. We are immensely proud of her. This is a very invasive surgery and recovery is slow but she is doing incredibly well and her surgeon is very pleased with her. She was discharged from hospital after 11 days and she is recovering for now in our apartment in Barcelona and can attend the hospital as an out patient.

We are indebted to you all, for your support in getting us this far. This has been an incredible journey with Aoife, what started out in my head as an impossible task, has become a journey of positivity and hope. Thank you one and all xxx

The link to Aoife's page is here, should you wish to follow or see updates.

https://www.facebook.com/LittleZebraWarrior/

Attached is a photo of Aoife and I with her neurosurgeon, Dr Gilete and an X-Ray showing the fusion.
+ Read More
Update 8
Posted by Susan Sage
3 months ago
   Share
Surgery Day:
Aoife is out of surgery & back in ICU. Everything went very well thank God. I have been to see her though she's heavily sedated and intubated & will remain in ICU until tomorrow. Just to see her & know she is safe was such a relief. Thank you so much to everyone for sending such lovely messages of love,support & many prayers, it really has meant so much to my family & I to know everyone was rooting for her. She will have a tough few days ahead but please God this is the start of a new, positive chapter for Aoife.
+ Read More
Update 7
Posted by Susan Sage
5 months ago
   Share
Delighted to announce that the walk of hope for Aoife has raised 19k so far, with some money still outstanding which I will update as soon as I can. The walk has been a phenomenal success and not in our wildest dreams could we have envisaged raising so much. The success of this is down to two individuals who have been absolutely incredible & have never looked for praise or public acknowledgement but it's so deserved. James Sexton & Davy Fitzgerald have been nothing short of amazing in their support for Aoife & in turn us. Hearts of gold & two genuinely caring people, we will be forever grateful to you both. We also need to thank Noel Marshall for donating as prizes two back ballers, also to Phelim Hillery & The Giftbox , Shannon for additional prizes of a luxurious bath set & voucher respectively. Thanks again to Starbucks for providing refreshments on the day & Mace Ballycasey for supplying bottled water. So very kind of you all & much appreciated.

You will have noticed we have surpassed our target!!! We are honestly stunned at this achievement. At the start of this campaign there was a mountain in front of us that seemed impossible to climb but climb it we have!!! Aoife's going to Barcelona!! The relief we feel is immense, we can concentrate solely on Aoife now & the rest of our family for the remaining few weeks before we travel. That means so much to us.

I need to stress that any extra money raised will go towards Aoife's ongoing care & needs. This operation won't cure our daughter, EDS is incurable, she will always have needs & we can't believe we will have money left to assist her. We are indebted to all who have helped us give hope for Aoife. Much love to you all for making a difference to our daughter's life xxx
+ Read More
Read a Previous Update

€125,309 of €100,000 goal

Raised by 602 people in 11 months
Created February 19, 2018
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
KN
€2,500
Kuehne and Nagel
23 days ago (Offline Donation)
€200
Anonymous
23 days ago (Offline Donation)
IP
€996
In memory of Mark Philips ( Philly)
3 months ago (Offline Donation)
W&
€1,530
Walk of Hope additional funds for walk bringing total to €21,530
3 months ago (Offline Donation)
€5,000
Anonymous
3 months ago (Offline Donation)
€200
Anonymous
3 months ago (Offline Donation)
€50
Anonymous
3 months ago (Offline Donation)
€5
Anonymous
3 months ago
CH
€20
Caroline Histon
3 months ago
PG
€50
Paul Guilfoyle
3 months ago
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a €5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.