Ciara's EDS Surgery Fund
My daughter Ciara was diagnosed with Ehlers Danlos Syndrome ( EDS) in early 2015 at age 13. Her young life is now consumed with pain. Gone are her fun days of dancing, cycling, trampolining and attending school like a normal teenager.
Since her EDS diagnosis she has since been diagnosed with Postural Orthostatic Tachycardia Syndrome (PoTs). As a result of these conditions Ciara's life has been severely impacted by chronic pain, partial dislocations of her joints, chronic fatigue, heart irregularities, gastro complications and headaches. Unfortunately these are just a few of the symptoms she experiences daily. There is no cure for this condition only management.
Currently, Ireland does not have an EDS specialist, In fact knowledge of this condition is minimal as is of the co morbid conditions that exist alongside it. Those suffering in Ireland are often left with no choice but to seek expertise outside their country.
Since we started this fundraising campaign in 2016, Ciara has since being diagnosed with more serious complex issues, Craniocervical and Atlantoaxial Instability and Chiari Malformation.. These were diagnosed when she underwent an Upright MRI in London due to her symptoms.
The further updates on this page details our journey to seek answers to get care for Ciara. And finally getting the news that she needed Neuro surgery to improve and save her life.
The purpose of this campaign is to raise funds for Ciara’s surgery in Barcelona on March 2018, and the associated expenses and her recovery . Unfortunately we know this will not be Ciara’s last surgery.
Both Ciara and I would be very grateful if you could support us. Getting Ciara the surgery now is imperative to her long term prognosis.
Ciara & Anne
My Dad’s first anniversary (27th February) and Ciara’s first ‘anniversary’ (8th March) of her surgery are approaching.
An update on the last year and sincere thank you
Since the New Year, Ciara has had a couple of admissions to hospital. Thankfully not related to her surgery but related to one of her many secondary conditions.
In January, She had to be resuscitated. This had been on going heart rate issue, plaguing her for a number of weeks, which was being managed by medication. Unfortunately it wasn’t working.
However this time it was different. Following administration of the drug to revive her, she then had an allergic reaction which then had to be addressed. Suffice to say, it’s yet another day I will never forget. The team in the hospital were fantastic.
2018 was a rollercoaster of a year for our family.
As I look at my diary entries this time last year, they all centre around , Ciara, my Dad and fundraising.
The fundraising activities kicked into action in December 2017, once we knew surgery was Ciara’s only option, our target being March 2018.
I will be forever grateful to my family and friends who gave up their time to support us. Words cannot express the gratitude I have for everyone who gave their time, energy and support when we needed it. I wasn’t much help a lot of the time due to my commitments to Ciara, and my parents.
I’m also Indebted to those who generously donated towards events and through the Gofundme platform. We would never have achieved our goal without the generosity of friends and strangers who supported Ciara’s fund. Thank you
As some of you know, my Dad during this time was fighting a terminal illness, Idiopathic Pulmonary Fibrosis. I was worried whether he would live to see us return from Barcelona. What would I do if this happened... I can’t articulate the number of scenarios that went through my head during that time regarding my Dad and Ciara.
Dad continued to amaze us , he was never off his phone chasing someone for a donation, his focus on fundraising for Ciara’s lifesaving operation was limitless, it certainly kept him going.
And of course Ciara, will she survive the operation, wIll she live to see her 17th birthday In December 2018. How will I get her through the operation and the pain of the recovery. These were the thoughts running through my mind as her Mum, I was truly terrified. However, when I spoke to one my of closest friends she said all my fears were warranted, but if Ciara and I were to survive the year ahead, I would need to park my fears and just get on with on it like I usually do. She was right.
None of us could have predicted how difficult or challenging last year would be, with my Dad dying within a couple of days of us flying out to Spain for Ciara’s lifesaving neurosurgery, and having to leave my Mum behind, It was truly heartbreaking. He was making sure I went, still getting to me to do what he wanted even in death. I can smile about it now, because he is not suffering and I know he is looking after Ciara, as he had wonderful faith.
Ciara made it through her surgeries, albeit with complications. But it’s to be expected with such complex neurosurgery. She has made an exceptional recovery, knocking down every obstacle that has been put in front of her. It has been tough, there has been down days but we get through them together, with the help of family and friends. But there have been fantastic days and weeks which we focus on during the challenging days.
Support is so important to people with chronic illness, it should never be underestimated.
Unfortunately, upon our return from Barcelona my Mum had to have surgery too in May. Later on in August she developed Pneumonia and sepsis and was hospitalised for a month. .
Although Ciara had to have an unexpected revision surgery at the beginning of October, the outlook on her overall recovery from her surgeries is extremely positive.
Ciara will always have EDS and the other comorbidities, but she is a fighter and isn’t giving up. She will continue to fight to live through her illness. She is a survivor
Although her recovery has been hindered due to the second surgery. There is no rush, Ciara has time now, which is something we didn’t believe she had this time last year. And for that as her Mum, I thank everyone who has supported us in her journey and continues to do so. My darling daughter is out of immediate danger, due to your help, kindness and support.
We wish everyone, family, friends, and all our supporters old and new the very best. We still need your support as Ciara still has Ehlers Danlos Syndrome and will always require treatment.
Follow her story on Facebook https://www.facebook.com/CiarasFightForLife/
Ciara & Anne
It’s been awhile since I provided an update. It’s been a busy few months with recovery. When we returned home from Barcelona, my Mum had to have two surgeries, which was sudden and unexpected. Our home ended up being a hospital wards for a number of months, and I was the nurse!
Thankfully both have recovered well now, but like any surgery it takes a long time for recovery.
It’s been 6 months since Ciara’s Surgery and I can honestly say this last year, has been the most stressful in my life. I’ve been through a divorce, changed jobs, moved countries etc.. but nothing compares to having the impending threat of paralysis or death looming over your only child. Then add the death of my Dad, a few days before we left our country for Ciara’s Neurosurgery and our lives were shook.
Ciara is adapting well to her new physical situation. You may remember, as a result of her surgeries, she can no longer move her head or her neck in any direction. She has to move from her waist. She hasn’t let it stop her do anything she wants to, which is marvellous, she has found her own workarounds.
Naturally she has had setbacks, that is part of any healing process of any major operation. She has been admitted to UHL numerous times since we returned home, three of those were due to pain management and nerve issues.
During July she was admitted with a suspected stroke, as Ciara’s head, neck and whole left side was leaning to the left and went completely heavy and numb. (Ciara’s head & neck are fused, she cannot move them). It eventually affected her face and it started to droop within 30 minutes of the episode starting. The paramedics were wonderful and dealt with situation brilliantly, as you can appreciate, it was a very scary time for Ciara.
Thankfully it only lasted 8 hours. Her CT was clear for a stroke. Unfortunately, subsequent to her admission and not being kept in isolation due to her compromised immune system, .Ciara started vomiting later on and ended up dehydrated. Thankfully it eventually did pass
As a result of this episode in particular and to review her post operative condition, we are returning to Barcelona at the end of this week to meet with Dr Gilete and Dr Oliver and for Ciara to have further tests.
Ciara has made wonderful progress during the last couple of months. Her mobility has improved greatly and she is learning to pace herself (some of the time!)
However she still has to cope with the remaining neurological symptoms, pain and fatigue, in addition to her EDS, POTS and gastric symptoms.
She is enjoying life significantly more than prior to surgery, she’s out and about, which is fantastic for everyone who is involved in her life to see. We just want it to continue
Thank you to everyone for your continued support, it really helps.
I will update you on our return from Barcelona.
You can see her journey on Facebook
Ciaras Fight for Life
5th April - Ciara’s Post Op complication
An update on what has been happening with Ciara during the last few days. As you will have seen in my previous update, Ciara has had a setback which is not uncommon in major surgery. And Neurosurgery & spinal surgery is fairly up there.
During the last few days we had appointments and discussions with surgeons and pain management specialists regarding Ciara’s condition.
They have identified that it is the intercostal nerve that is causing the pain, which unfortunately isn’t that easy to treat. Initially a surgical option was being proposed , but thankfully a more conservative option is now being looked at. We are trying another option before we have the nerve block done.
This setback is going to impact us financially and more importantly our return date. As we know we cannot return without this being resolved. As there is no care for Ciara once we return.
For Ciara and I, all we want to do is get back home to be with my Mum. It’s been extremely difficult being separated from her, just a few days after losing my.Dad.
Please keep Ciara in your thoughts and that the surgeons manage to get a resolution to her pain sooner rather than later.
Thank you for all your support
7th April - Update on Ciara - Nerve Block
Ciara was in theatre for 2.5 hours this afternoon for the nerve block. It went well. Dr Catala was pleased. Dr Oliver got in the act too, he took out some of Ciara’s stitches too
Don’t think Ciara was too pleased.
We won’t know how successful it is, for at least 48 hours. Ciara is still in pain from all the poking an prodding they were doing with the camera and the needle.
Fingers crossed it’s worked.
Thank you to everyone for your messages of support. It means so much xx
Its 27th March, Ciara will be 3 weeks post op on the 29th.
It’s been a very difficult few days for Ciara. She has been in extreme pain for the last couple of days.
The pain was radiating from where her ribs had been removed, right up to her shoulder, but also impacting her breathing.
It deteriorated on Monday. As a result, I brought her to Dr G this morning, Ciara was in a extreme pain when he touched her and started to cry uncontrollably, and for those who know Ciara, this is not in character, she doesn’t usually show her pain.
They feared it was a pneumothorax given her symptoms but following a series of scans an X-rays that was thankfully ruled out. However the CT did show up, was that her rib was rubbing off the lung, does cause dreadful pain. This is due to her extremely lax and hypermobile bones. Ciara has history of her ribs going in and out of position. But she can normally put them back in place herself.
After meeting with her Doctors we agreed a revised pain management plan and hopefully this will help manage the immediate condition.
It’s been extremely difficult watching her in distress, not being able to get comfortable, eat or sleep. Thankfully after getting sleeping medication today to help, she is finally asleep, which will hopefully give her some well needed rest.
In the days that followed the pain Meds kept the pain under control. However her breathing was still a cause for concern. We were in touch with the team at Teknon and they reassured us this was normal, it would just take time. As long as Ciara was doing her exercises and moving about.
We are due to see Dr Gilete for a review tomorrow Tuesday 3rd April, where hopefully he will give us an indication of when he thinks Ciara will be able to fly. Although we know this is heavily dependent on overall health.
Ciara has improved a lot in the last 10 days, she’s eating and sleeping better. The wounds are healing well. But unfortunately physically she is still extremely weak, but this is to be expected given what she went through before and during the surgery.
We now face the challenge when we return home, how will we get health services to support Ciara?Because at present there is none.
When we left she had just been discharged from paediatric as she turned 16 and was being transferred to adult services. But apart from that like others who have had to travel abroad for this neurosurgery with Ehlers Danlos, there is no support in place.
There isn’t a neurosurgeon in the country at this present time who will take EDS patients under their care. So what am I do to do if something happens to Ciara when I return ? Yes I have Dr Gilete on the end of a phone, but that isn’t practical for either party all the time.
As someone said to me prior to going to Barcelona, “you will feel so much better when the operation is done, you will be able to relax when you come back”, because i basically live on my nerves. I didn’t have the heart to tell them that when we return it will be a new very different fear I will have.
I will have a new focus when I return besides getting Ciara back on track physically
Hello people, i have been gone through the situation when you feel your life is going end it had been nightmare when my kids were taken in custody by authorites in 2010 because i was a poor single mother and one of my child got injured and they took custody of all of my 3 kids, i had been to courts for fighting my kids custody bck finally after a long long struggle and fighting and after lots of hurts and pains i won the coustody bck of my kids, however solicitors fees was too much , all my saved monney was gone on this case, Now happy that i have my children back but life is not good financially i am on medication i am asthma patient I recive little social welafre alownce which is not enough, weather has changed to freezing and my house is cold i immidiate need finances for oil heating to warm my house as i have kids at home Kindly amy person who can afford please help. And please support my fundraising campaign Just think anybody's littlle help could make a big differnce in some one's life. Life has been so much complicated for us that i feel closed with no door open and even unable to explain openly there are so many family matters Please open the doors for me and support me give us little life freedom to my kids they deserve like all other normal kids, being a mother i have no shame for fundraising and asking for money i think i can do anything what is right to change my childern lives in a positive way . So please donate i would be truly grateful.
Ciara and I can’t thank everyone enough for all their support, it has been truly amazing. It’s our first week home from Barcelona and we are living in a daze, being truthful. Unfortunately Ciara is still in a lot of pain which was to be expected, but initial results from the operation are fantastic. Most important of all Ciara is out of immediate risk now. We now have to look forward to the next phase, getting Ciara strong enough to be able to regain the life she wants, which we all know she will. We will continue to keep you updated on her progress. Follow Ciara on Facebook- Ciara’s Fight for Life Anne x
May the good Lord ease Ciara's pain and discomfort . Well keep offering prayers for you and your family Ciara. You are so young yet so brave to face this surgery! May Mama Mary cover you with her blue mantle of protection and help you with your recovery!
Glad the op is over. Thinking of ye.
Happy that Ciara's surgery went well. We'll keep praying for the whole family! God bless !
Has Ciara been diagnosed with chiari malformation. Typically it & eds goes hand in hand. Prayers for healing!