Life For Sarah Jackson Brain & Neck Surgery
Donation protected
Hello everyone,
IMPORTANT UPDATE IN UPDATES SECTION!
Thank you for taking the time to read my daughters page, she's an extremely sick 31 year old and we live in Essex, England. I'm writing this as we desperately need your help.
Please see updates section if you only want to see Sarah's updates. Also there's BBC & Sky News videos if you scroll below.
Sarah had her first surgery on May 21st 2019:
This was for (Anterior Cervical Discectomies C3-C6 fusion and plating), it cost approximately £100,000. It came to over this when you add in flights, accommodation, bone simulator machine, hospital fees, scans, surgeon fees, anesthesia fees, medications etc.
Although we are extremely grateful for every donation, all the raffles, events etc that were held, unfortunately we still had to take out a huge extension on our mortgage to cover just this first surgery.
Please, if you can carry on helping with the donations, shares, raffles or anything you can think of to help as Sarah really needs these other two surgeries and unfortunately, now we have this very big mortgage hanging over us we are unable to afford the others. Any help, any donation, is much appreciated.
This is only the first of many operations Sarah has to have and because she's not able to have them all done in one go, this is why there is a higher figure in the region of £250,000-£300,000.
We chose the USA after many consultations worldwide and although Spain is a fair bit cheaper, Sarah's consultation there didn't go very well. The neurosurgeon wanted to fuse most of her spine and completely missed her Chiari on the scans. Although he works out fantastically for many, he wasn't right for Sarah.
We are trying everything possible to raise the funds, Sarah's Dad is working 7 extremely long hard days a week too. I care for Sarah, even though am extremely unwell myself. We were hoping in the next month or so to have raised enough for the next set of surgeries, this was about 6 months ago and so far we're nowhere near close to the second surgery. Sarah's worsening the longer it's going on.
Sarah's been extremely sick for almost 7 years with Chronic Lyme disease, Postural Orthostatic Tachycardia Syndrome, had open heart surgery in 2016, in 2017 suffered a big seizure which caused a lot of damage - leaving her mainly bed bound, needing speech and occupational therapy. Sarah now only really leaves the house for doctors and hospital appointments, even then in a wheelchair as she's unable to walk or stand for more than a couple minutes before fainting.
Most days spent:

I apologise this is long, 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 and why not in the UK.
**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 not one surgeon will do it in the UK as it makes these types of surgeries are 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

A video from East Anglian Daily Times:
https://www.eadt.co.uk/news/sarah-jackson-from-essex-needs-to-raise-300-000-for-usa-brain-operation-1-5974164?jwsource=cl
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, they're dangerous operations anyway and they don’t have the skills/knowledge to operate on someone with EDS. EDS effects every cell of Sarah's body, but especially her joints. But most worryingly, her spinal cord.
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.
Unfortunately these surgeries are extremely difficult and costly at that! So we've set up this campaign as we need your help to spread the word and hopefully raise the money we need.
Surgeries:
Anterior Cervical Discectomies C3-C6 fusion and plating - done!
Now just need to get these done!:
Chiari Malformation - is a neurological disorder that affects the brain and spinal cord. 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, 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 experience respiratory problems, dizziness, balance issues etc 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.
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 daily to prevent further damage.
All of the above have caused a wide range of symptoms, I'll list a few (minus all of Sarah's Lyme symptoms):
* Extreme neck pain with severe headaches
* Neurological symptoms- wide range
* Could be the cause of Sarah's POTS (will see after surgeries!)
* Chronic fatigue
* Dizziness, balance issues and vertigo
* Vision issues
* Seizures
All of these issues could be gone with surgery, certainly improved! But most importantly, if she doesn't get these surgeries done it will crush her spinal cord and prove fatal.
Sarah is a wonderful, proud and determined young woman. I miss my beautiful daughter and best friend. She deserves a life free from these life threatening conditions.
Please give my girl a life again, a desperate mum❤️
Julie (Sarah’s mum and carer)
At one of the fundraisers from "The Burstead Farm Shop" - Billericay, Essex
Easter Event from the farm shop again, such amazing people!
Some news info (can be found online)
Much loved family photo (when Sarah was fairly well)
Family mean everything! (Sarah when well - with her brother)

IMPORTANT UPDATE IN UPDATES SECTION!
Thank you for taking the time to read my daughters page, she's an extremely sick 31 year old and we live in Essex, England. I'm writing this as we desperately need your help.
Please see updates section if you only want to see Sarah's updates. Also there's BBC & Sky News videos if you scroll below.
Sarah had her first surgery on May 21st 2019:
This was for (Anterior Cervical Discectomies C3-C6 fusion and plating), it cost approximately £100,000. It came to over this when you add in flights, accommodation, bone simulator machine, hospital fees, scans, surgeon fees, anesthesia fees, medications etc.
Although we are extremely grateful for every donation, all the raffles, events etc that were held, unfortunately we still had to take out a huge extension on our mortgage to cover just this first surgery.
Please, if you can carry on helping with the donations, shares, raffles or anything you can think of to help as Sarah really needs these other two surgeries and unfortunately, now we have this very big mortgage hanging over us we are unable to afford the others. Any help, any donation, is much appreciated.
This is only the first of many operations Sarah has to have and because she's not able to have them all done in one go, this is why there is a higher figure in the region of £250,000-£300,000.
We chose the USA after many consultations worldwide and although Spain is a fair bit cheaper, Sarah's consultation there didn't go very well. The neurosurgeon wanted to fuse most of her spine and completely missed her Chiari on the scans. Although he works out fantastically for many, he wasn't right for Sarah.
We are trying everything possible to raise the funds, Sarah's Dad is working 7 extremely long hard days a week too. I care for Sarah, even though am extremely unwell myself. We were hoping in the next month or so to have raised enough for the next set of surgeries, this was about 6 months ago and so far we're nowhere near close to the second surgery. Sarah's worsening the longer it's going on.
Sarah's been extremely sick for almost 7 years with Chronic Lyme disease, Postural Orthostatic Tachycardia Syndrome, had open heart surgery in 2016, in 2017 suffered a big seizure which caused a lot of damage - leaving her mainly bed bound, needing speech and occupational therapy. Sarah now only really leaves the house for doctors and hospital appointments, even then in a wheelchair as she's unable to walk or stand for more than a couple minutes before fainting.
Most days spent:
I apologise this is long, 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 and why not in the UK.
**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 not one surgeon will do it in the UK as it makes these types of surgeries are 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
A video from East Anglian Daily Times:
https://www.eadt.co.uk/news/sarah-jackson-from-essex-needs-to-raise-300-000-for-usa-brain-operation-1-5974164?jwsource=cl
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, they're dangerous operations anyway and they don’t have the skills/knowledge to operate on someone with EDS. EDS effects every cell of Sarah's body, but especially her joints. But most worryingly, her spinal cord.
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.
Unfortunately these surgeries are extremely difficult and costly at that! So we've set up this campaign as we need your help to spread the word and hopefully raise the money we need.
Surgeries:
Anterior Cervical Discectomies C3-C6 fusion and plating - done!
Now just need to get these done!:
Chiari Malformation - is a neurological disorder that affects the brain and spinal cord. 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, 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 experience respiratory problems, dizziness, balance issues etc 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.
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 daily to prevent further damage.
All of the above have caused a wide range of symptoms, I'll list a few (minus all of Sarah's Lyme symptoms):
* Extreme neck pain with severe headaches
* Neurological symptoms- wide range
* Could be the cause of Sarah's POTS (will see after surgeries!)
* Chronic fatigue
* Dizziness, balance issues and vertigo
* Vision issues
* Seizures
All of these issues could be gone with surgery, certainly improved! But most importantly, if she doesn't get these surgeries done it will crush her spinal cord and prove fatal.
Sarah is a wonderful, proud and determined young woman. I miss my beautiful daughter and best friend. She deserves a life free from these life threatening conditions.
Please give my girl a life again, a desperate mum❤️
Julie (Sarah’s mum and carer)
At one of the fundraisers from "The Burstead Farm Shop" - Billericay, Essex
Easter Event from the farm shop again, such amazing people! Some news info (can be found online)Much loved family photo (when Sarah was fairly well)Family mean everything! (Sarah when well - with her brother)Organizer
Sarah Jackson
Organizer