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Life For Sarah Jackson Brain & Neck Surgery

£16,425 of £285,000 goal

Raised by 539 people in 8 months
**URGENT FUNDS NEEDED FOR MAY 21st!!**

Hello everyone, thank you for taking the time to read my daughters page. She's an extremely sick 30 year old and we live in Essex, England. I am writing this gofundme page as we desperately need your help! 

Sarah has been extremely sick for 6 years with chronic Lyme disease, Postural Orthostatic Tachycardia Syndrome and also having had open heart surgery in 2016. In July 2017 she then suffered a big seizure which caused a lot of damage, leaving her basically bed bound, needing speech and occupational therapy. Sarah now only really leaves the house for doctors and hospital appointments, even then it’s in a wheelchair as she's unable to walk or stand for more than about a minute before fainting.

I apologise it is a long story, I’ve kept it as short as possible but want to explain Sarah's story the best I can for those who don’t understand why we need to raise such a huge amount of money.

**In very short: We need to raise this money because Sarah has now also been diagnosed with:
Chiari Malformation (10.2mm herniation), Craniocervical Instability (CCI), Atlantoaxial instability (AAI) and needs Anterior Cervical Discectomies C3-C6 fusion and plating. But as she has Ehlers-Danlos syndrome (EDS) it means no surgeon will do it in the UK as it makes these types of surgeries extra dangerous. So she has to go to see one of the top specialists in the world, which is in America**

Us on 'Kay Burley Show' - SKY News:
https://youtu.be/Fwt7ezNTlo4 

Us on BBC Look East:
https://youtu.be/t0Edb52s2Ng 

The only way to properly test for Chiari, CCI and AAI is with an upright MRI, which isn’t available on the NHS. We had no choice but go private again and sent Sarah's results to multiple specialists around the world after the scan in July 2018, with the diagnosis of 10.2mm of cerebellar tonsillar ectopia/hindbrain herniation (Chiari), CCI and AAI.

Sarah needs decompression of the brain stem and fusions of the cervical vertebra in order to prevent her conditions from paralysing and ultimately killing her.
Without specialist surgery, she will deteriorate and eventually die from these degenerative conditions.
These surgeries are not available in the UK for EDS patients on the NHS or privately.
Without treatment, there’s no doubt that at any time - organ failure, paralysis and a slow and painful death lay ahead.

There's a specialist in America who will operate on Sarah and can get her back to an almost normal life again. Unfortunately the surgeries are extremely difficult and costly at that!
So we've set up this campaign as we desperately need your help to spread the word and hopefully raise the money we need. We need to raise approximately £300,000 for the surgeries and other costs that come with it (accommodation, flights, scans, hospital fees etc).

Anterior Cervical Discectomies C3-C6 fusion and plating - this is the first operation Sarah will be having done in May! This is why we need as much help as possible and as soon as possible, we wouldn't be asking if we wasn't desperate. This is one of the main ones that will save Sarah's life and we really don't want to have to cancel it.

Chiari Malformation - is a neurological disorder that affects the brain and spinal cord. What happens is that the lower part of the brain (called the cerebellar tonsils) is pushed down from the skull and rests on top of the spinal cord. Dangers that Chiari poses in individuals (like Sarah) is that by pushing the cerebellum tonsils down, the base of the brain endures more pressure and that can result in neurological problems. The life expectancy of those with Chiari, there are still ongoing studies, so it can be hard to tell how long an individual can live with it. It is important to understand that Chiari affects people differently. For example: someone (like Sarah) who experiences respiratory problems, dizziness, balance issues etc with this will have a short lifespan without the right treatment. Which is why it's so important she gets these surgeries done as soon as possible.

EDS - effects the formation and structure of the connective tissue in the body. This includes skin, muscles, ligaments, blood vessels, organs and heart valves. This is why UK specialist’s won’t touch Sarah, because it is a dangerous operation anyway and they don’t have the skills/knowledge to operate on someone with EDS with these kind of conditions. EDS effects every cell of Sarah's body, but especially her joints. But most worryingly, her spinal cord.

CCI (Craniocervical Instability) - is a structural instability of the craniocervical junction which leads to deformation of the brain-stem, upper spinal cord and lower brain (cerebellum). It often occurs in patients with EDS and other hereditary disorders of the connective tissue.

AAI (Atlantoaxial Instability) - excessive movement between the ligaments of (C1) and (C2). Neurologic symptoms can occur when the spinal cord or adjacent nerve roots are involved. Which Sarah is really suffering with, she has to wear the hard neck collar 23-24 hours a day to prevent further damage. 

All of these have caused a wide range of symptoms, I'll just list a few (minus all of Sarah's Lyme symptoms):
* Extreme neck pain with headaches
* Neurological symptoms- wide range
* Could be the cause of my POTS
* Chronic fatigue 
* Dizziness, balance issues and vertigo
* Vision issues - mainly severe photophobia and nystagmus

All of these issues could be gone with surgery! But most importantly, if she doesn't get these surgeries done it will crush her spinal cord and be fatal.

Anyone that also wants to do some sort of fundraiser for us, we’d be so grateful! We truly have got to the stage where we need all the help we can get, this doesn’t have to just be things like jumping out of planes. All sorts can be done to raise money, there’s lots of ideas online. Ask where you work if they could help in any way?

She's only 30 years old with her whole life ahead, she's sick and tired of being ill, I desperately want her to get back to her old life and I know she's desperate to start work again and to have a life back again too.

You can now also help JUST by shopping! All you have to do is follow this link (just below) and then go through to your usual store and pay as normal. Then the company will give us a percentage!

https://www.easyfundraising.org.uk/causes/sarahjackson19 

Thank you 
Julie (Sarah's mum and career)
 
Recent video of Sarah:
https://youtu.be/uV4d62KhVqY
+ Read More
Hi all, Julie here (Sarah’s Mum/Career)
As many of you know, we have the first part of Sarah’s surgeries booked on 21st May (the most important one). We had to break up the surgeries due to lack of funds, which will now cost more in the long run, but we had to get this one done. Sarah’s surgeon gave us a time frame and honestly, it is showing. She’s declining every week, she’s weaker, her voice is getting significantly worse which is a very bad sign also.
For this visit we will need approximately £150,000. As you can see, we are a long way off of that and we have just weeks to raise it!
This is a recent photo of Sarah, she’s in excruciating pain, exhausted and so stressed over all this. We’ve tried everything possible to try raise money: TV, newspapers, sending letters to companies who apparently help, so much I can’t remember.
I’m pleading with you as a mother who doesn’t want to lose her “baby”.
Please can you keep sharing this page
Many thanks
Julie
+ Read More
Urgent funds needed!! First surgery booked for 21st May in America for the most important part, the neck/spinal fusions. They’re becoming more and more worn and pushing on my spinal cord more so therefore much more life threatening.
He gave me a timescale of when I needed it done by. I trust my surgeon 100% he went through everything with me on the phone again, because we have to keep in close contact, and he asked how it went with the UK surgeon etc... I explained, then he said after another long chat that “we need to get you into surgery ASAP”.
I panicked! We don’t have the funds, please anything you can do to help us is much appreciated.
I am booked for 21st May but will obviously have to be out there before then.
All help much appreciated! Preferably before then, but also after as we will have massive debts to pay off!
Many thanks,
Sarah x
+ Read More
After seeing the UK neurosurgeon yesterday it has become clear that he will not be able to do my surgery with my American surgeon. I am clearly disappointed by this, but it was a very slim shot in the first place.
So now I will be booking my surgery in the USA, at his next available appointment which should be between mid-end of May this year. I have complete confidence in my surgeon after meeting with him earlier in the year and the vast amount of knowledge that he has, not only about the operations I need but all my other conditions.
We still need as much help as possible with raising money, as you can see.
I also just wanted to say, I have had a few comments about going to Spain as it’s cheaper etc. I did have a consultation with the guy in Barcelona, he wanted to completely fuse my back so I basically wouldn’t be able to move and he couldn’t even see my Chiari on the scans (where as all other neurosurgeons can). So I don’t trust him to operate on me personally. But thank you for your comments.
Thank you for reading!
Sarah x
+ Read More
At least another $3230 spent on scans, appointments, tests, etc. These are only for the invoices I have found too, minus all the cost of flights, accommodation, tons of taxis to all the scans and appointments etc. It’s safe to say it was one VERY expensive short trip!
+ Read More
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£16,425 of £285,000 goal

Raised by 539 people in 8 months
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