Save Samantha -fundraising for life saving neuro-surgery

For: Samantha Smith
England, United Kingdom
Organizer: Dominic Apenteng
£62,407
of £150,000 goal.
Raised by 3438 donors
41% Complete
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The Story

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 I’m not perfect; lately the determination has been replaced by desperation and my positive attitude is somewhat faltering at the reality of my challenge ahead.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.


***HOW CAN YOU HELP?***


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 www.facebook.com/savingsamantha

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.




Fundraiser Updates

Posted on May 23, 2017

Posted on May 23, 2017

My last update since Barcelona received lots of views so I’m going to assume many of you have watched it and are aware of the recent turn of events. In short, I have now been diagnosed with Atlanto Axial Instability (AAI) in addition to the CCI. Shockingly, I am at risk of internal decapitation each time I move my head. The psychological effect of this knowledge is all encompassing.

My brain stem disability index is at 95%. This means that my clinical status with regards to cervico medullary syndrome is advanced; hereby the need for surgery ASAP is stressed and I have been given a 1-2 month timescale (as of todays date we have 6 weeks maximum after which I refuse to consider).

The Barcelona surgeon claims ‘ … there is no chance of improvement without surgery and her condition will continue to decline as time goes on’

(my rate of decline is rapid bearing in mind that only 8 weeks ago I was averaging 80% on the brain stem index; I hate to think what the next 6weeks will bring for me to endure).

Additionally, there are significant signs that I have Tethered cord syndrome, I am seeking a hospital to do the testing for ‘occult tight filum terminale’. The 5 tests I have been told are needed prior to surgery, and to plan for future surgeries equate to an average of £5,000 plus lots of travelling to specialist services across the UK (which feels unbearable now). I’m currently trying to find services providing these tests.

In conclusion, alongside the travelling and pre-op testing, our main goal (the lifesaver) is to have a large occipito-cervical fusion and decompression; This involves placing my skull in its correct position, decompressing my brain stem & spinal cord, drilling hardware into both sides of each vertebrae and correcting their position and dislocations.

My surgeon will harvest my lower back ribs and use them to fuse my skull and cervical spine into place. The fusion will range from CO to T1 where it is hoped that my thoracic spine is reinforced enough by my rib cage to withhold the weight and pressures placed upon it. This surgery will result in a 100% loss of mobility of my head and upper spine. At present am very scared and grieving for the loss of mobility and restrictive life ahead of me.

After this first surgery, I will be placed in a medical coma for a number of days. Once I have woken (assuming all has gone well) I may or may not need to have a halo brace drilled into my skull to stabilise my head. A few days later, I will require a second operation, during which, my surgeon will operate on my spine via the front of my neck and remove damage discs, replacing with metal caging to further strengthen the area. For this stage of the fundraise we are require £100,000.

Unfortunately, tests suggest I also have the instability further down into my lumbar region. This will need fixing later in the same manor, once I have recovered (hence, the additional £50,000 fundraise). This surgery will remove 100% of my spinal movement in addition the loss of head and neck movement. The prospect of this leaves me fearing for the future I know I should be grateful to have.

I know the fundraising page still states that I am hoping for surgery in the US; I haven’t dared to edit this yet as I am still in the decision making process over which surgeon will complete my operations.

Please recognise, that whilst I can’t deny the absolute necessity for these operations in order to guarantee my life; I am still digesting the information and its so very hard. I am still trying to comprehend how my imagined life will unfold. I am still struggling to comprehend the disabilities I will have post surgery.

I know that the US surgeon has a depth of understanding of EDS patients and my related issues which is incomparable to other surgeons. I know that the long-haul flight will weaken me and cause extreme pain and compressions. I know that the US option is far more expensive than the Barcelona option.

I see that we are far closer to reaching the overall costs of Barcelona and that the waiting times are less than the US. I also know that the Barcelona surgeon has a great track record of such surgery….

But, I am struggling to make such a life changing, life saving, complicated decision over who to choose as my surgeon and I ask that you please continue to be understanding for the next 72 hours whilst I decide my best route ( I have until Friday to book Barcelona).

On a separate note, the amazing success of my fundraising is such a source of hope! We have done incredibly well achieving the grand total so far. Thankyou, thankyou, thankyou.

Samantha


Posted on May 13, 2017

Posted on May 13, 2017

As you know, I posted my update yesterday on the medical situation so far... finding the words and strength to bare all again meant I had to dig deep.

I'm a private person who had mastered the art of pretence; enabling myself to appear as a regular, pain free, socially and professionally active female.

One challenge here is that the fundraising forces me to share my journey from rock bottom... this whole soul baring process has left me feeling so very vulnerable; an emotion I've worked damn hard to avoid in the past.

During this horribly difficult situation, the importance of self acceptance and a strong support network has been reinforced for me.

That's thanks to you.
You've made this bearable.
You've shown me that it's okay to be vulnerable.

...I've never been so pained & challenged, and yet, I've never felt so blessed & supported.

It wouldn't be as easy to see my blessings if it wasn't for your kindness.

Every single one of you who has followed, shared and supported #SaveSamantha.

It's all thanks to you.
#TeamWork 💜

Click here to follow regular updates on Facebook

Posted on May 11, 2017

Posted on May 11, 2017


News from Barcelona wasn't as good as we had hoped....

My condition is far worse than we originally thought.

...

The initial stage of fundraising will now need to be brought forward.

We have less than 7 weeks to raise the first £100,000 for the first two lifesaving surgeries.

Due to the rate at which I am deteriorating and the need to have my body as strong as possible to aid recovery, I must have these operations no later than the first week in July. Unfortunately, I still need to raise funds for these in order to book the operations ASAP.

More news in the video link below.

Thank you for your continued support.

#SaveSamantha

Click here for Sam's latest update on her visit tothe surgeon in Barcelona

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