442
442
10

Aoife's surgery fund

112 437 € sur un objectif de 100 000 €

581 personnes ont fait un don en 7 mois
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.
+ Lire la suite
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
+ Lire la suite
We have surpassed the half way mark & we are blown away by the love & support we have received. We have just under 40k left to raise. The impossible task I saw at the start of this campaign now seems very possible. I truly believe we can do this for Aoife & that is solely down to the incredible support we have received. Please keep sharing because together we will Save Aoife. Thank you xx

https://www.gofundme.com/aoifes-surgery-fund
+ Lire la suite
Woke up this morning to the news we had reached the 30k mark on our fundraising! We are truly blessed with the support shown to us in recent weeks, it really has been amazing. As hard as it is to be so public, the absolute goodness of people really gives us such hope for Aoife.

The bank holiday weekend is usually a very busy one in our house as our two eldest children have birthdays over it. This year our eldest daughter was 21, we had cake & my family came over on the day itself but unfortunately Aoife wasn't well enough to even come downstairs. She misses out on so, so much, it's so unfair. We did manage to get her out for dinner on Saturday & I can't tell you how wonderful it was to have her with us. She was so exhausted & in such pain after the two hours in a restaurant, it was straight to bed. It really is like someone has pulled a plug, there's just no more energy there. It was a victory for her though, to get out of this house & have normal family time. It's how it should be & please God, how it will be again after this surgery.

https://www.gofundme.com/aoifes-surgery-fund
+ Lire la suite
We are a quarter of the way to our target!! The kindness shown to us is truly humbling. Please keep sharing & keep Aoife in your thoughts. Your support means so much to us, we are so grateful to each & everyone of you.

https://www.gofundme.com/aoifes-surgery-fund
+ Lire la suite
Lire un communiqué précédent

112 437 € sur un objectif de 100 000 €

581 personnes ont fait un don en 7 mois
Partagez votre campagne pour recevoir davantage de dons. Connectez-vous pour suivre l'impact de votre action.
   Connecter
Nous ne publierons jamais quoi que ce soit
sans votre accord.
Nous vous ferons savoir si les dons affluent lorsque vous partagez votre campagne.
Impossible de connecter votre compte Facebook. Veuillez réessayer ultérieurement.
OM
25 €
Orla Meehan
il y a 11 jours
NL
500 €
Natasha Lambert
il y a 12 jours
1 000 €
Anonyme
il y a 19 jours
LM
20 €
Liam Maher
il y a 19 jours
DB
200 €
Dympna Breen
il y a 20 jours
WN
1 805 €
Woulfe Tones GAA ( Darts & Bingo night)
il y a 21 jours (Don hors connexion)
AM
50 €
Aimee McNeil
il y a 21 jours (Don hors connexion)
AZ
25 €
Aleksandra z
il y a 21 jours (Don hors connexion)
1 000 €
Anonyme
il y a 21 jours (Don hors connexion)
JM
655 €
Jim Rocks Memorial Match
il y a 1 mois (Don hors connexion)
ou
Utiliser mon adresse e-mail
En continuant, vous acceptez les
conditions d'utilisation et l'avis de confidentialité de GoFundMe
Recevez ponctuellement des communiqués marketing de la part de GoFundMe. Vous pouvez vous désinscrire à tout moment.
Le compte de l'organisateur de cette campagne rencontre un problème technique. Notre équipe a contacté l'organisateur et lui a proposé une solution. Demandez-lui de se connecter à GoFundMe pour vérifier son compte. Revenir à la campagne

Êtes-vous prêt(e) pour la prochaine étape ?
Même un don de 5 € peut faire la différence.
Faire un don Pas maintenant
Connectez-vous à Facebook pour découvrir le nombre de dons récoltés grâce à votre partage.
Nous ne publierons jamais quoi que ce soit sur Facebook sans votre accord.
Recevez ponctuellement des communiqués marketing de la part de GoFundMe. Vous pouvez vous désinscrire à tout moment.