About Sara

So I was a "normal" kid up till the age of 13 where I then started to feel quite nauseous and suffer badly with migraine and my eyesight. As I was still only a child I was tossed here and there by medical professionals and never really diagnosed. 

Anything they found was noted as incidental. Including "the cyst" that we now guess (as there's no records to it) was under 3mm long between 2001 and 2003 when it first appeared on my MRI reports.

 However they put me on antidepressants, propranolol and sumatriptin instead of enquire as to why a 15 year old was partially sighted. 

By 16 the contraceptive pill had controlled my migraines enough,  that my sight had returned! Incredibly I'd then been diagnosed as a manic depressive who had simply experienced hysterical blindness and off I went into the big bad world not knowing what was ahead...

By 2017 I'd finally made it in life. And I was where I wanted to be. I'd had my own cake making business since 2012, I was an award winning entrepreneur and I'd written for my local news paper even though im dyslexic (thanks Laura Scottern!) And I'd achieved so much for someone my age. 

I'd just met my soul mate too so I was proper flying! But after a trip to the dentist on the 31st of July, for a routine abcess treatment - it went horrifically wrong where she pulled the live nerve out of my jaw, and gave me a flesh eating superbug as well as Pseudomonas (I am never using private emergency dentists again) 

As the days wore on step by step became harder to physically manage and within a week I was wheelchair bound with no clue as to why. And my whole body was vibrating. In short sharp bangs. 

A doctor once insulted me by telling me it looked like I had the hiccups. It was more than hiccups. And for the following 7 years I hiccupped every day. No matter what I did I couldn't stop it. Medications, aromatherapy nothing worked. 100 to 150 times a day I jerked and convulsed. I had tinitus too.  A loud ringing in the ears. But every test back said something different.

Then in 2018 I collapsed in Olivers arms and he ran me to hospital terrified, and I'm not surprised as I had cdiff and my coccyx, broken from a fall I had the year before unbeknownst to us was now septic. I had my coccyx removed the following year. And somehow fell pregnant almost immediately. The pregnancy was a blessing as the illness that near killed me was now gone. But I was still wheelchair bound and still fighting for PIP to be backdated 2 years. 

They took me to court 3 times in total. Saying i cpuldnt have that and didnt get this. My first tribunal i had all the points I needed bar anxiety. The second he overulled the decision and said i need a court of law to grant you your anxiety points. I agreed and said id go back for the 3rd to show how its done fairly. 

They took away all my points in that tribunal. That 3rd time I was 14 weeks pregnant and I hemoraged the following day. Due to the absolute shame and disgrace they put me through and then they banned me from speaking about it publicly because they told me I would be prosecuted. I was so traumatised I couldn't apply for PIP again until 2023. 

It was March 2023 when they diagnosed me with a Benign Cystic Tumour of my pineal gland. I remember standing in his office and he telling me I had something else entirely which was FND - Functional Neurological Disorder. 

Months later I'd found Dr Santarius the top specialist in the UK in pineal cysts once my Neuro told me he had found "the cyst" and here I was telling Dr S my diagnosis on a urgent referal as my apparent 9mm cyst on Winchesters scanner was now coming up 13.9 at Addenbrookes. 

The research I'd undertaken showed my cyst looked fine but could well be mistaken for a Pineocytoma. And concidering my symptoms I needed regular scanning. So it was agreed I'd be scanned again a year later. I got a third opinion from Charlie Teo one of the world's best. It was discovered I have aqueductenal stenosis and hypertension from the calcification in my cyst. Nobody could rule out what it was or wasn't until it was in a dish so it was agreed it was a cystic tumour for arguments sake as it was rock solid and contained a cyst inside a cyst. And that it needed removing urgently. Charlie offered to come to the UK and remove it free of charge if I funded him here and a nhs hospital invited him to perform surgery with temporary clinical privileges. Despite paper reports news articles radio shout outs nobody came forward to help.

So now we engage plan B

My plan is that if we spend this year in our funding stage and get me at least through surgery, rest and recuperation. The rest shall follow. 

We have a lovely company and celebrity following now with actors and brain surgeons alike all willing us to do well and for me to get the opperation I  so desperately need. We just need your support too! 

So if you don't have the funds to donate to our cause or you think I've got too big a dream on my shoulders that's fine! All I want you to do is tell someone about us. That typical coffee and catch up with a friend that ends up with you having a good old chin wag " Ooooh i forgot to tell you! Did you hear about The Sara's Hope Trust" and your friend, hair dressers / partner go "No, who are they?" You can tell them all about us and then one day say "She bloody well went and did it you know!"

Because my lovelies, that's how this story ends. If you aim high enough in life your always bound to hit one or two balls. (That bits for you George. Go be someone sensational ✨️)

If you have made it this far thanks for listening.

Sara xx