Save Samantha -fundraising for life saving neuro-surgery

For: Samantha Smith
England, United Kingdom
Organizer: Dominic Apenteng
Save Samantha -fundraising for life saving neuro-surgery (Samantha Smith)
of £200,000 goal.
Raised by 5692 donors
74% Complete

The Story

(****** Update as of Aug 14th 2017- ****** Please see the update posts for further info/ In short, I am now aware that I will have to raise further funds for unexpected operations urgently required and booked for Saturday 19th August 2017.... I am so upset to learn this and the knowledge that I will have to increase the fundraise, in addition to the deadline by a likely $70,000 but for now, until we have a definitive costing of the additional surgeries, I'm going to round the goal amount up to $200,000 and push the deadline back until November*******)

I’m Samantha, I’m a 30 year old single mother of two fantastic children. I owned a business and worked as a Psychotherapist until recently when my life was turned upside down and I learnt that my brain and spinal cord are being crushed under the weight of my skull.

The UK has no one qualified to do the complex surgery that will keep me alive. I must now fundraise for my own life… and for my babies to have the mummy they so desperately need and deserve.

In December last year, after a lifetime of pain and 8 years of tests, misdiagnosis’s and ill health, I was finally diagnosed with Ehlers Danlos Syndrome (EDS). EDS is a genetic condition that means the ‘glue’ that holds the body together is faulty and too weak, causing extreme widespread pain, daily dislocations, cardiac abnormalities and multiple other illnesses. Despite these issues and constant pain I’ve remained largely independent until January 2017.

I started to lose consciousness regularly, vomit blood, experience extreme head pain, multi organ involvement, chest pain and weakness in my limbs. In March, 2017, I was told that Crainocervical Instability (CCI) caused by the EDS was to blame for these problems.

CCI means that the ligaments in the neck are too stretched and weakened to support my head. This is causing the top of my spine to squash my brain stem under the weight of my skull. My spine is compressing my spinal cord. My cervical discs are damaged and prolapsing. I feel the relentless agony of it every minute of the day in addition to the nerve damage.

Unfortunately, the EDS makes me resistant to local anaesthetics and many analgesics so pain relief is ineffective and a positive attitude and sheer determination to enjoy life is my only option. I’m not perfect; lately the determination has been replaced by desperation and my positive attitude is somewhat faltering at the reality of my challenge ahead.

CCI is slowly stripping me of my independence and normal functioning. I must dig deeper than I ever thought possible to manage day to day tasks; it’s incredible how my children’s laughter can relieve the pain for a fleeting moment.

The harsh reality is that if I don’t raise the funds for this surgery abroad then it will cause organ failure, paralysis and then it will take my life
. The specialists can’t tell me how long this will take, only that time is of the essence and the longer we wait, the more damage will be done.

I am in constant pain in my neck, head and spine and week in, week out my neurological damage is becoming harder to ignore. My body goes into shock if I stand for more than a few minutes and I have tachycardia, tremors, and visual/hearing disturbances.

The condition itself is a cruel blow, but learning that there are no surgeons qualified to operate on an EDS patient in the UK was even harder.

I have truly exhausted every avenue; myself and my family have spent the last 8 years fighting and funding private care to get the answers I needed. Now, I find myself in the powerless situation where I can no longer work, run a business or pay for the lifesaving surgery I so desperately need.


*******update below as of August 2017*******
I have FOUR MONTHS to fundraise within the region of £150,000 for the operation with a US surgeon who has developed a method to successfully complete this treatment on an EDS patient (95% success rate).

The alternative is not an option I am willing to consider; My beautiful babies deserve their healthy, happy momma back and I have way too much to live for to let this condition win.

A Facebook page has been set up to share the story and spread awareness at

Please help by supporting, following, sharing or donating wherever possible.

We will regularly post updates, fundraising event details, stories of our fundraising heroes and heroines, and plenty more.

Thank you so much for your support.

Please read the updates below for changes as the situation progresses.

August 2017******UPDATE*******

****** I am now aware that I will have to raise further funds for unexpected operations urgently required and booked for Saturday 19th August 2017.... I am so upset to learn this and the knowledge that I will have to increase the fundraise, in addition to the deadline by a likely $70,000 but for now, until we have a definitive costing of the additional surgeries, I'm going to round the goal amount up to $200,000 and push the deadline back until November*******
As noted below 

Fundraiser Updates

Posted on August 14, 2017

Posted on August 14, 2017

Yesterday was maybe the hardest one yet for me on many levels...
I was told that I need another urgent lifesaving surgery on the 19th August...

In simple terms; this now gives me at least one unexpected surgery to fund, with an estimated cost of $70,000. 

For me, it means so much more... Im absolutely devastated.
EDS has taught me to listen to my body... and I knew for myself a few weeks ago that my cervical spine was still unstable and unsafe... I was told that it's just a natural part the healing process.... This week I finally had scans which confirmed my fears, more instability and the need to operate ASAP.

It also showed that I have a very 'odd' looking spinal cord which has thickened a lot since the last operation... my surgeon is unsure whether this is anything of concern as they haven't seen it before. He is seeking further advice with this...

Finally, I need testing for Thrombosis of the blood vessels in the brain... which may require a 3rd operation....I was hoping to know this for sure, prior to my next surgery but time limits may not leave room for finding more answers just yet.

It wasn't so much the devastating news that upset me... it wasn't even the fact that prior to surgery over here I have to find the strength to book my anaesthetist, my bloods, my blood screenings, scans, history & physical and somehow cover the costs again...or that I now know the agony that I'm going to have to face without pain relief...

It was the fact that I'll be away from home and many people that I love for longer than we planned and it was the realisation of something bigger...Yesterday, I finally recognised the power that Ehlers Danlos Syndrome has over me.

I realised that it literally won't ever stop trying to take me down... The domino effect that this surgery is having on my body is causing it to destabilise in other areas and maybe my future is more about how long I can last between surgeries, as opposed to my original plan of fixing up these areas and getting back to life as I knew it.

This really scares me, because I'm not sure I was born with an endless supply of strength.
My cortisol levels are rock bottom which won't help my low mood, but still, most nights I cry with a craving for normality and now I know that my normality isn't the going to be the same as many other people's.

I need to accept that my new normality means fighting to be heard, then fighting to be treated and then fighting for normality again before it takes me down for the next round....

EDS is one mighty cruel condition and the Uk healthcare system simply MUST be educated on it; we know that it's passed down to at least one of my children...and I refuse to allow them to live this journey.

I thought I was nearing the end of my story, but it seems I'm only just getting started...So maybe my journey was never meant to be the one I've had clearly planned out in my mind for years...and maybe now it's about me spending time between surgeries focussing on a healthy lifestyle and waking our healthcare system up to EDS. I don't know.

Ehlers Danlos Syndrome has changed my imagined life path... BUT, it's given me a gift also; I respect each day that little bit more...and I'll take pride and joy in the small, boring, normal moments... for they too are a blessing.

Life as I knew it is very likely over... 

This is just the beginning, and I ask that you please continue to support #savesamantha.

Posted on July 28, 2017


Posted on July 28, 2017

Click here for local news on Sam falling post surgery

Hi everyone. Thankyou so much for your continued support. I've been keeping 4000 of you updated via my Facebook page @savingsamantha but for those of you who aren't on there I wanted to share a few of the posts here.... I'm so so grateful for you getting me this far. 
Its early days and I'm still very early to recovery from 2 massive neurosurgeries. Unfortunately I did suffer a setback as mentioned above in the news article. 

I am,however, feeling very determined to keep pushing forward with you all in mind .... your comforting words and reassurance, donations and support are overwhelming and something I'm eternally grateful for.

Thanks again- Samantha  

Posted on July 13, 2017

Posted on July 13, 2017

pre up preparationHi all, Sam's partner Dom here... and so it begins - this is what the fundraising's been for....5.5 hours under the knife at the hands of a surgical genius!!. Good luck baby ❤️

#surgery #SaveSamantha
#WashingtonDC #DrHenderson — with Samantha Smith.

Post op Update from Sam's dad.

Samantha went down for surgery around 1pm (DC time) and came out of surgery around 51/2 hrs later. We spoke with Dr Henderson and he said surgery went extremely well
He has fully straightened / restructured from C2 to T3 which was a little more than initially thought but he felt this would give her better support for the still unstable C1 and C0. He has also performed a second operation to release the tethered cord which will hopefully help with her leg strength and associated problems.

We have since spoken to Samantha and although she was uncomfortable, she is ready for the fight ahead. She passes on her thanks to all who have supported, fund raised and wished her well. Without you all we would not have got this far.
Samantha now has the chance to resume her life in the way she would wish.
The next few days and weeks will be very telling and will require a lot of strength, determination to get Samantha through the pain. As soon as she is able Samantha will update.


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