Life changing medical treatment

Hi! I’m Amy.

Up until 6 years ago I was healthy, active and fun loving person . That was until a virus struck me and changed my life forever. I lived a perfectly normal and blissfully healthy life right up until my 31st birthday. My life is now spent desperately trying to conserve enough energy to give my daughter the basic care she needs, but even this is beyond my reach most days without significant support from family. What people don’t tell you about long term illness is that nobody else’s world stops, just yours. So everybody else still has to go to work and continue their life as normal which means support is limited no matter how necessary it may be.

So many things have been taken from me that it’s painful to list them all. To go from exercising regularly, working, travelling the world, having an active social life and being the parent I had always wanted to be for my child to then suddenly being extremely unwell and in bed for 22 hours a day is a tough pill to swallow. But we’re going to turn it into a gorgeous multivitamin, swallow it down and do the best we can with what we’ve got!

The past 6 years have been spent in survival mode, trying to parent my child whilst also trying to get to the root of a chronic illness that put my life on pause. Sadly the NHS admittedly know nothing about post-viral illness, so patients are left to fend for themselves and research their own condition. To become your own doctor as well as your own advocate whilst battling an illness that severely effects energy production is no mean feat. A year into my illness I was diagnosed with Myalgic Encephalomyelitis (ME) and Postural Orthostatic Tachycardia Syndrome (POTS) and so far none of the limited available treatments have made any difference to my condition or low quality of life.

Over the years I have spent countless hours (and thousands upon thousands of pounds) trying to get to the root cause of my illness. Last year I flew myself to Barcelona to see a specialist neurosurgeon and was eventually diagnosed with Cranio-Cervical Instability (CCI)from extensive scans and testing.

We believe the initial virus caused an autoimmune cascade which resulted in damage to my connective tissue. Since connective tissue effectively holds everything together, this damage has resulted in structural abnormalities within my spine that are very likely the cause of my symptoms. CCI is a condition where the skull is no longer securely fixed on top of the spine as it should be, it is shifting and causing brain stem compression. 

I am now in a position where I need to leave the country to treat these issues, since there are no available options within the U.K. Due to the severity and seriousness of these conditions, the treatments are costly and currently out of my reach.

The donations from this fund raiser will go towards treating those conditions through either regenerative injections (such as invasive stem cell procedures) or spinal fusion surgery. The total needed will likely exceed £100k, but that felt like an unachievable target so we set this to £60k. We will hopefully be organising numerous events over the summer to help aid our fundraising. 

I’ve wasted 6 years of my life in incredible discomfort with my condition continuing to deteriorate. Left untreated these conditions will worsen and the hope of reversing the damage will be lost. My current life is unrecognisable to my life before the virus and I won’t stop fighting until I get my quality of life back (for me but also for my daughter). And I hope you can help me along the way!