Mags EDS Surgery Fund
Mags is a 32 year old woman facing a huge health battle.
Mags requires life-saving surgery in the US and she needs your help to make it happen.
Mags has multiple health conditions, that have drastically affected her quaility of life over the last few years. Mags suffers from a rare genetic connective tissue disease called Ehlers Danlos Syndrome(EDS). This results in faulty collagen throughout her body making it a multi-systemic condition. Collagen is found throughout ones body; organs, skin, joints, blood vessels etc. It literally is the glue that holds the body together. This means the symptoms of EDS can be very far reaching, affecting most parts of the body.
Mags' joints have deteriorated throughout her body and she subluxes her joints daily. Her muscle tone has declined , also causing more subluxations and pain. Mags also has a lot of co-morbid and serious life altering conditions attached to her EDS diagnosis.
She has Dysautonomia and Postural Orthasthatic Tachycardia, which affects her autonomic nervous system. This results in Mags having rapid increases in heart rate. She gets palpitations just from standing and her blood pressure drops from postural change. This results in fainting and chronic fatigue.
Mags weight has declined over the last few years, as she suffers from gastrointestinal issues related to her EDS. This means she suffers from constant nausea, gets sick daily, suffers bowel obstructions and finds it very hard to eat. She now only eats small portions , soft food and some days cant keep anything down. This means she is weak and easily fatigued.
Mags also suffers from Mast Cell Activation Disorder due to her EDS. (MCAD) - is characterised by the accumulation of altered mast cells, affecting functions in potentially every organ system; particularly the skin, the gastrointestinal tract and the cardiovascular and nervous systems. This means Mags develops rashes, allergic reactions and swellings due to many environmental factors, medication and food.
Because Mags' EDS is complex, she has deteriorated rapidly. Consequentially, she has had to seek expertise in her conditions from the United Kingdom. All of her trips to the UK have been self-funded, as she has received no financial assistance from the Irish healthcare system. The tests and treatments have literally cost tens of thousands up to this point, but unfortunately all these trips are necessary, as there is no expertise in Ireland to fully manage her care and declining condition.
The most serious diagnosis to-date came last year, when Mags had an MRI of her neck and brain. She received the devastating news, that she had Chiari Malformation (CM), Alanto Axial Instability (AAI) and Cranial Cervical Instability (CCI).
Chiari Malformation means that the lower parts of her brain have been pushed downwards towards her spinal canal by 8mm. This can be a very serious and on occasion life threatening condition.
AAI is characterised by excessive movement at the junction between the skull and the neck. In Mags' case, she fully dislocates the facet joints, upon rotation, of the two top disks in her neck. This leads to her 'catching' her spinal cord during certain manouvers, which is extremely dangerous.
These serious conditions have resulted in huge deteriorating neurological symptoms, which are massively affecting her day-to-day life and have dramatically increased her head and neck pain. She now wears a hard neck collar in the car, when tired and on bad days to protect herself and ease symptoms.
In many cases surgery is usually required for these conditions. Mags has sought the help and advice of specialists in the UK and Ireland. Thanks to people's enormous generosity earlier this year, Mags was able to travel over to the USA to see the two world specialists in Ehlres Danlos Syndrome (EDS).
Unfortunately, the news that she received was worse than we expected (please see link below for full details). Due to instability in her neck and back, Mags is severely compressing her spinal cord and brain stem, which is extremely dangerous.
We have been told that she requires urgent life-saving surgeries, at least 2 and possibly even 3.
The date for surgery has been set for the 31st January 2017, which gives us roughly 4 months to fundraise the necessary 80,000e required (we have raised 12755 to-date). Any funds raised in excess of the target will be put towards Mags' ongoing treatment.
We know so many people have already generously donated, so we are simply asking those people to share this page to raise awareness and perhaps their friends and family might be able to contribute. Also, if anyone has any fundraising ideas or suggestions please contact us directly at 085-1556914 or through the Facebook page.
Mags is determined to get her old life back. Recently married, she has a new future to start and live. She was a vibrant and active young woman, and EDS has robbed her of this vibrancy over the last few years. However, she has always shown strength and tenacity in the face of adversity and shown a determination to keep going and lead as normal life as possible.
Through pure stubbornness alone, she has struggled to defy the odds in so many ways and often has. However, this has increasingly become a daily struggle. It has been hard for those who love her, to watch Mags lose her independence and watch her rapidly decline, both in spirit and body.
In some ways she has become a shadow of her former self but her strength, courage and smile remains. She often seems healthy to the outside world, because of the invisible nature of this
condition. She is optimistic that with the right care and advice, that things will improve. Mags deserves a pain free and happy future and we will strive to help her get it.
We are so incredibly grateful to all our friends and family who have rallied around us so graciously over the last while.
We sincerely hope that this surgery will provide Mags with the quality of life that such an amazing person deserves.
Mags EDS Fundraising Committee.
Link for more information on Mags' diagnosis: https://www.facebook.com/permalink.php?story_fbid=645051955675363&id=339663276214234
Just a message to thank everyone who has donated over the last week. The majority of you are people we have never even met and we are completely overwhelmed by people's immense generosity.
We can't put into words just how much your support means to us and hopefully it is contributing to me getting my new-beginning.
We arrrived to Maryland on Saturday and are now getting everything ready before next Tuesday's first operation. There is still a lot to do!
Your support provides us with the positivity required to get through the next few months. I am determined to get better.
If I may ask one last favour from you?
Please continue to share this GoFundMe page on social media and with your friends who you think might contribute. Every little does help.
Thank you all from the bottom of my heart.
New speed bump on the road to recovery...
On the final stretch and both Jimmy and I have been totally overwhelmed by everyone’s generosity and kindness. The amazing efforts people have gone to with their fundraising events has been uplifting for both of us amongst all the stress. Without everyone’s support we would never have made it this far. We cannot convey the degree of our appreciation.
We are only now getting the full finalised costings of the medical fees to be paid out in the United States. We have recently discovered that the two surgeries cannot be done in the one admission as it would be too much for me to endure in one go. So they have to be done in two separate admissions. My first admission date is the 18th of April, with the next admission date being the 5th of May. We are hoping the second surgery can be performed in a surgery centre to reduce costs but if there are any complications from the first surgery - depending on how I react to the first surgery - it may need to be done in the hospital also.
What does this all mean? It means that because the first surgery is being done separately, we are looking at extra hospital admission fees. If it is performed in the surgery centre, costs will rise to €20,000 extra but if it has to be performed in the hospital it will rise by €43,000.
We therefore are having to increase the Go Fund Me target by €20,000, at least, with a hope that we can raise this prior to the second surgery on the 5th of May.
We have a consultation with the surgeon on the 13th of April and he will fully review scans and test results to determine if a third surgery will be needed. We are hoping this might be avoided but we will update everyone as I go through this medical journey.
Thanks again to everyone for your support up to this date. I may be unlucky with my health but I am certainly very lucky to have received such good will and support from friends, family, colleagues and complete strangers.
People have rallied around when I needed it most I may need you to do so again. If you have already contributed I would ask that you share my story on to friends and family and on your social media. If you have not contributed I would ask you to share my story and consider making a contribution.
Thanks very much,
Just a brief message to thank everyone for getting us over the €57,000 mark!
We cannot put into words, just how much time, effort and money (obviously) you all have sacrificed so far in getting us to this point.
As I'm sure you've seen from Mags' blog, the operation date has been set for the 18th April. Mags is currently in London for pre-operative tests and will have to go back again in March too.
Her days are now taken up mainly with getting ready for this operation. We simply would not be getting through all of this without everyone's support - it has been truly overwhelming and we can't thank you enough.
We still have some way to go, €23,000 to be exact, so we would kindly ask you to keep sharing this gofundme page or perhaps consider running a fundraiser.
All help, big or small, is massively appreciated!
Thank you all!
Mags EDS Surgery Fundraising Committee
For more information, please contact Mags' husband, Jimmy @ 0851556914