Simon W. Barlow -Smyth

Hi , my name is Josi and will share Simons story . With the cost of living escalating and world disasters , we understand that money is tight . We appreciate any amount , no matter how small to help Simon with a better quality of life . He needs help immediately .. Please be generous and thank you

Here is his story

Hello, my name is Simon , I’m 37 years old and this is my story...

I was diagnosed with a Grade II Astrocytoma brain tumour (I named "Brian") in August 2016, for which I underwent 3 surgeries, radiotherapy, and chemotherapy, all in the hopes of delaying future growth and him mutating into a higher grade tumour, more aggressive tumour. I finished treatment for the tumour in June 2018. Unfortunately, damage caused by the tumour, surgery and treatment left me with a number of long-term health issues that have prevented me from working since my diagnosis and therefore unable to financially prepare for a time when my home would require adaptations and equipment to help me to continue to live here safely.

Earlier this year (2022), I began experiencing an increasingly noticeable loss of power/fine motor skills on my left side (the side affected by Brian's location). In short, my left arm and leg were just being really uncooperative and 'heavy', making simple daily acts like; walking, rising from a seated position, climbing the stairs, dressing, and manipulating objects in my left hand, extremely difficult or impossible.

It eventually dawned on me that these and a few other issues accumulated together had a highly probable Brian shaped cause, I quickly got in contact with my neurologist and neuro-oncologist and they arranged an urgent MRI scan for me in late February.

After an unusually long and anxious wait, I was finally seen by my neuro-oncologist at the Christie 2 weeks later to be given my MRI results. Unfortunately for me the news wasn't good. In fact I'd say it was pretty devastating for myself and my family. Brian is back with a vengeance, now grade 3 or 4, but definitely cancerous. He's now spread to my motor cortex, and is inoperable. I'm told radiotherapy isn't an option this time either. But I was started back on a 5 day course of chemotherapy the very next day. To be followed by another 5 day course just 3 weeks later.

In the 7 weeks since receiving my devastating news my mobility and motor skills have continued to gradually decline further and I've had 2 quite nasty falls at home. Going up and down the stairs in particular for me has become quite the terrifying ordeal as I'm so concerned about falling and being seriously injured.

So now, having previously resisted (out of 'pride'), suggestions from friends to set up a Go Fund Me for assistance with home adaptions, and having looked into other avenues of funding and finding waiting lists exceed my current life-expectancy, I'm no longer prepared to let said 'pride' stand in the way of the quality of life I have remaining and my ability to live out my days safely in the comfort of my own home.

I am therefore appealing for financial assistance primarily to pay for the cost of having a stair lift manufactured and installed. Due to my height and weight and the layout of my home stairs, unfortunately I require a more specialist stair lift, the best of 4 quotes for which I've received is £7,395.00 and this would take 4 weeks to manufacture and install.

If by some miracle of generosity this appeal should exceed the goal total or if funding should somehow become available through other means, the money raised here would be used for other essential home modifications and equipment such as wheelchair ramps for house access, doorway widening, bathroom modification etc.

Thank you in advance for considering donating to my Go Fund Me.

Simon. ❤️