We are deeply saddened to inform everyone that Jay Garland, Suzi’s Dad and very much a big part of team Garland lost his life to pancreatic cancer on the 14^th July 2021 after receiving his diagnosis just 2 weeks earlier.

As I’m sure you all know, Jay was an incredibly talented, passionate and hard-working family man – never without a smile, sparkle in his eye and a gorgeous head of hair!  He was strong, brave, funny and charming and brought such joy to everyone he met.

 Jay had requested himself for family flowers only at his funeral and instead for any contributions that people do wish to make, to be donated to Sarcoidosis UK through his beloved daughter Suzi’s JustGiving Page:

Before June 2020 none of us as a family had heard of Sarcoidosis let alone Neurosarcoidosis, it quickly became a word we wish we’d never had to hear in connection with Suzi, she finally had a diagnosis for a neurological problem Suzi had suffered since the age of 17, well a sort of diagnosis, as there is actually no definitive blood test or scan, the diagnosis of Neurosarcoidosis is complex, after the start of neurological symptoms it can take a few years to be diagnosed. I

n Suzi’s case it took 14 years.

A mass that was discovered in Suzi’s late teens named by Suzi as Tina the Tumour was treated with steroids.  The mass diminished, to a size that ‘if you weren’t looking for it, you’d never know it was there’, these were the very words Doctors used and Suzi carried on with her life.  Suzi was taken off the Neurological doctors list, instead was passed on to an epilepsy department with the hope to get her medication right and control her epilepsy.

Suzi had yearly appointments with an epilepsy nurse where she expressed concerns over her continuous  headaches, auras and seizures, however the connection to Neurosarcoidosis was never made. Perhaps if there was more awareness of the disease and its symptoms, within the health profession, early intervention could have saved Suzi’s life. 

Just after the National lockdown was announced in April 2020, Suzi was suffering with severe neck and shoulder pain, two visits to A&E she was told it was most likely a pulled muscle. Over the next week or so she developed double vision and went back to A&E where they did a CT Scan  which revealed Suzi had lesions in the same area of her brain and in addition along her neck and spine. She was transferred to Coventry University Hospital where she underwent various tests, lumbar punctures and scans, and eventually admitted to the Neurology Ward.  

On this ward Suzi met a specialist who mentioned this could possibly be an extremely rare disease called ‘Neurosarcoidosis’ it was suggested they operate to take a biopsy from her brain to establish a diagnosis.  Suzi agreed  and in mid-June underwent surgery to perform the first of two biopsy’s of the masses within her brain. There are different forms of Neurosarcoidosis which can affect the peripheral nervous system which has a better outcome to those with central nervous system affecting the brain and spinal cord as in Suzi’s case. There is a 10% death rate from Neurosarcoidosis, twice that from general sarcoidosis.  90% of patients survive, this gave us hope and the strength Suzi needed to get through, Suzi had complete optimism that she was going to beat this.  

After initial complications with Hydrocephalus (excess water on the brain) causing pressure to build in Suzi’s brain, Neurosurgeons fitted a shunt to reduce this pressure which would get so high it would render her blind, she was well enough to return home with the hope that the new wonder drug she was having every 8 weeks would do the trick and stop the inflammation.  

Suzi’s return home was brief lasting 3 weeks, the extra fluid that was being produced from her brain wasn’t being absorbed by her body because of the high protein the inflammation was causing within the central nervous system and Suzi had to have her abdomen drained a couple of times before being allowed home again briefly in October for less than a week. It was at this point onwards it seemed the disease progressed, continuing hydrocephalus with excruciating headaches from the pressure rising in her head, lumbar puncture readings that had never been seen at the hospital before.

Complications developed and after an emergency operation to remove the shunt and battling a five week long infection including meningitis, her body was still struggling with inflammation and incredible pain. Suzi had an external shunt fitted to the base of her spine. This meant Suzi wouldn’t be returning home for some time.  

It is so important to say the whole time Suzi was in hospital, with no visitors, no family to hold her hand, Suzi found an inner strength that carried her through, she never complained about her lot and took each day as it came with kindness to all around.  Always smiling and always thoughtful about the people around her and the staff looking after her.

In November Suzi had a new shunt fitted and the second biopsy, Suzi suffered a cardiac arrest after surgery which she managed to bounce back from, her strength and determination pulled through but there were complications soon after in the beginning of December and another shunt was fitted.  

Suzi unfortunately despite her strength and determination had lost her sight due to the incredible pressure she endured around the brain. She was undeterred by this and still smiled on, with the hope that it may come back as it had earlier in the year.  

Suzi unfortunately continued to deteriorate, we were no longer able to communicate by phone without her sight and relied on hospital staff to tell Suzi how much we loved her.  The neurological damage was taking its toll too with memory loss and confusion she was loosing a lot of weight from being sick, extremely tired and not able to eat much at all. 

Suzi suffered another Cardiac arrest on February 27th and this time it was too much for the body to bear.  She remained on the life support until March 2nd, then surrounded by her family the decision was made to switch the machine off.

Suzi, as many of you know, was amazing, funny, caring, loving, ferocious when needed and talented, so so talented. Suzi lived life to the full despite living with the epilepsy and the constant debilitating headaches that would often keep her from living freely the life she wanted. Suzi had an amazing work ethic and hated missing work due to illness and would worry people wouldn’t understand what she was feeling. Suzi was engaged to be married and had everything to live for. She was so selfless and passionate about people, there are really no words to describe how amazing of a person she was.

Unfortunately most doctors don’t understand or know a lot about Neurosarcoidosis, often it takes a dramatic worsening of symptoms -  as in Suzi’s case -  before really being investigated.  

Sarcoidosis can affect any part of the body and is extremely rare 20 in 100,000 suffer sarcoidosis only 2 in 100,000 from Neurosarcoidosis and then is dependant on what sort of Neurosarcoidosis you get. It is rare. 

Sarcoidosis is an inflammatory disease that kicks the immune system into overdrive, causing the formation of clumped inflammatory cells known as granulomas. Sarcoidosis of the nervous system (brain, spinal cord and nerves) is called Neurosarcoidosis and most people are diagnosed between the age of 20-40. Suzi was 32. So little is known about the disease, its cause and there is no known cure. From sharing Suzi’s story we hope to raise money and awareness to fund research into Neurosarcoidosis, developing treatments and offering support to patients and families affected by this awful disease.

We will be continuing to do all we can to raise awareness.

Thanks for taking the time to visit my JustGiving page and read Suzi’s story.

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