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Save Samantha - Life Saving Surgery

£24,817 of £130,000 goal

Raised by 945 people in 4 months
"I must now fundraise for my own life and for my babies to have the mummy they so desperately need and deserve. I am in constant pain in my neck, head and spine and week in, week out my neurological damage is becoming harder to ignore."

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31y/o Samantha is a single mum and Psychotherapist from Gtr.Manchester.

She has a connective tissue disorder called Ehlers Danlos Syndrome (EDS-Type1).

Connective tissues hold the body and its organs together, but faulty connective tissues cause complications, pain and multiple daily dislocations throughout the whole body.

Her spine is collapsing and dislocating, due to the EDS and she requires her FOURTH life saving and life changing Neuro-surgery in America.

Let’s get Samantha back to what she does best; Her career helping others and more importantly, back to the fun-loving mummy that her young children so very much miss & deserve.

No Neuro-surgeons are qualified to operate on Samantha in the U.K. and so we must raise in excess of £100,000 to pay for the surgery in America ‼️

This is time critical.

Follow Sam’s story on www.facebook.com/savingsamantha  and #SaveSamantha

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‘Samantha’s 2017/18 story’

In 2017, Samantha became very unwell very fast and Neuro-surgeons discovered that the weight of her skull was causing her spine to collapse due to the tissue weakness. She lost her private psychotherapy clinic that she had worked hard to build and became bed ridden.

Damage to her brain stem and spinal cord caused intermittent paralysis; She became wheelchair dependant & unable to be upright without agonising pain, and memory loss. She was at risk of internal decapitation.

There were 3 surgeons worldwide able to complete the surgery she desperately needed in America. #SaveSamantha fundraising was a great success and Sam underwent 3 lifesaving surgeries in August and September 2017.

She learned to walk again, and researched and rehabilitated herself- due to no NHS assistance available for EDS patients with her condition in the U.K.

Sam regained her independence as a mummy to Jensen and Brooke again and is petitioning for a healthcare pathway for others with EDS. ( https://petition.parliament.uk/petitions/212713 )

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Recently, Samantha’s health has declined. She was devastated to learn that her spine is more unstable than surgeons originally believed and the flexible scaffolding used to fuse her spine in 2017 (pic above) was not aggressive enough to keep her safe.

Her body was one of the rare few to reject the bone marrow graft and her spine is still dangerously unstable causing scary symptoms to reappear including damage to her heart, memory, pain and movement disorders and multiple dislocations of the neck and vertebrae each day.

Samantha is no longer independent and will face paralysis, organ failure and eventual death without a more aggressive, time critical neuro-surgery in the US.

This aggressive neuro-surgery will remove all movement in her skull and spine, but will save her life and halt the damage of her
spine and organs.

Her children desperately need their mummy back.

Please help give Samantha the chance she’s bravely fought so hard for.

Help #SaveSamantha to raise awareness and funds in excess of £100,000 for life-saving neurosurgeries surgeries.
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On Sunday Samantha's Dad Phil impressively hand cycled 120km the same distance as Manchester to York at a family fun day to raise money for his Daughter Samantha.

Phil has his own mobility issues and arthritis so this wasn't an easy challenge he set himself. Supported throughout the day by family, friends and Save Samantha supporters he was cheered over the finish line with lots of love.

He said to the Rochdale Online: “I underestimated how hard it would be, but it wouldn’t be a challenge if it wasn’t.

“We’re hoping to raise a lot more on the day as we’ve turned it into a full day out.”

We had lots of local support from businesses including a bouncy castle and face paint for the children, food, drinks, clothes, massage and many more stalls.

Samantha attended the family fun day and supported her Dad alongside her Mum, siblings and her own children.

It was lovely to see Samantha at the event, full of smiles and hugs for those supporting. However, those closest to her know that each public appearance has hidden pains and that it will take days of recovery.

After the event Samantha shared onto her Save Samantha Facebook "Bursting with thanks & pride for dad and everyone involved yesterday. It’s taken everything out of me, so I’ll write the message that it deserves as soon as I’m able ❤️"

We are awaiting the fundraising total from the day and will share on our Save Samantha Facebook page soon.

Below is a link to Phil and Samantha's ITV report :)

https://www.facebook.com/SavingSamantha/videos/2049485195341557/
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October is Social #SaveSamantha and we have held our first event already!

Our Save Samantha community are virtually coming together to hit the next mile stone of fundraising.

A massive thank you to Wendy and the staff at Crompton House C of E school who held the very first Social for Sam today and raised an impressive £62!!

Well done ladies! The cakes looked delicious. If anyone would like more information or a fundraiser pack for £5 to host your own event please hit reply to this email.

Event ideas include coffee mornings, wine tasting, beer tasting & Halloween parties!

#SaveSamantha Team ❤️

Do you get our regular updates on our Facebook?

https://www.facebook.com/SavingSamantha/
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Evening everyone, we hope you are all well.

We just wanted to say a massive heartfelt thank you for all of the shares, donations and private messages to Save Samantha this evening. Samantha has been in hospital today as mentioned in an earlier post, she is stable and understandably tired and resting.

She has asked us to post a message on her behalf as she doesn't have the energy to reply to all of your kind wishes individually. We absolutely know you will understand and support this, it has been a very emotional day!

Message from Samantha ...

Thank you as always to ITV Granada Reports for their continued support in sharing my story. Each person that continues to support, raise awareness and be a part of the Save Samantha community I really do owe my life to.

I just want to clarify that the interview states that my child has the condition. This is not something that I choose to be in the media. Whilst a child may have EDS, this does not mean that the child will progress to having CCI or be fighting for their life as in my case.

Each case of EDS is individual to that person. Whilst symptoms maybe similar and types overlap it is a rare situation that I find myself to have both EDS and CCI.
For anyone wanting to learn more about EDS please have a look at my new website. For regular updates on my health journey, fundraising events and EDS awareness please sign up to our weekly newsletter, there is a pop up on my website.

Love and gratitude, as always, Samantha

http://www.itv.com/news/granada/update/2018-09-26/a-race-against-time-to-save-samanthas-life/

www.savesamantha.co.uk

https://www.gofundme.com/save-samantha-neurosurgery
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Quick update on my health situation.

Last week, I was admitted into hospital in London whilst they did testing on my Autonomic Nervous System (ANS).

The ANS is responsible for control of the bodily functions not consciously directed, such as breathing, sleeping, the heartbeat, and digestive processes.

Mine is becoming more and more dysfunctional due to spinal cord damage and EDS.

I was initially looking forward to these tests as I’m always curious to learn more about my body and it’s unique ways, but I knew the journey down would be particularly exhausting, especially as it was on the same day as a 4-5 hour upright MRI of my neck and skull.

Day 1
They attached me to a 24hours Blood pressure monitor. This did a reading every 20 minutes for the 24 hour period. I had to do numerous exercises to trigger my symptoms (such a climb a flight of stairs, walk briskly and change from lie down up upright position). These triggers cause my heart to struggle as it goes tachycardic (dangerously fast) and I begin to shake before losing vision and losing consciousness.
I was frustrated that each time I triggered an episode, my mild tremor worsens. The tremor and sporadic changes in heart rate and blood pressure caused the machine to malfunction every single time I had a ‘bad episode’

Day 2.
I was strapped to a ‘tilt’ table with heart, oxygen and blood pressure monitors. They changed my position using the tilt table as seen in the images below, and asked me to complete a number of tests such as deep breathing (to stimulate the vagus nerve) and mental arithmetics (to see the effect of positional change on my cognitive thinking and heart rate) .

They took bloods in these different positions to see if my body responds chemically to the stressors as well as physically.

Day 3.
They did as the day before, but fed me a large, high calorie, milky liquid meal. Then they tilted the table and observed my heart rate and Autonomic response as my body struggled to meet the needs of digestion and functioning in an upright position.
Digestion makes me very sleepy due to the extra work it needs my body to undertake.

I’m awaiting the feedback report following a meeting of specialists this week. I don’t think the results will show the true extent of my Autonomic problems because I was not tilted to a true upright 90 degrees position, and I was strapped securely, taking the pain and pressure from my limbs which would usually work harder to hold me together. My head was rested back, on the table relieving the majority of my neck strain.....

I don’t feel this was a reliable way to reconstruct the struggle my body endures when I am stood up unsupported.

As for the MRI of my neck and skull... I’ve had a brief report and I can also see myself that things do not look ‘good’. I’ll have a detailed report in the following days, but I’m becoming very worried about the instability and new symptoms.... time is definitely of the essence for my Neurosurgery.

I need your support now as much as ever in helping us to reach the £100,000 target so that I can book the surgery & stop further lasting damage.

Love and thanks as always ,

Samantha

#SaveSamantha

https://www.gofundme.com/save-samantha-neurosurgery
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£24,817 of £130,000 goal

Raised by 945 people in 4 months
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