We urgently need your help – our courageous sister Kirstin, 36, needs life-saving spinal surgeries and ongoing stem cell therapy. It’s not available in the UK and needs to be privately funded.
For many friends the above will come as a shock. You may have only heard that Kirstin is sick and can’t work or go out anymore.
Perhaps you’ve heard she has fibromyalgia, PoTS, Vitiligo, ME and other chronic conditions. But none of Kirstin’s diagnoses fully answered questions around the serious deterioration in her health - until recent discoveries.
Anyone who knows Kirstin will tell you she’s a funny, caring person. Before she got too sick to leave the house, we had a standard joke that she would be late because she’d made friends with three people on the way home.
What you may or may not know is Kirstin has spent most of her life living with constant pain and illness. It started back in 1991, with Post Viral Syndrome and ME. She was only six years old. Little was known about post viral conditions or their long-term effects and Kirstin has lived with deteriorating health ever since.
Despite this, she went to uni and got her degree in drama and enjoyed socialising, gigs, theatre and spending time with family and friends. Kirstin loved her job - running arts and mental health projects in prisons, schools, day centres, hostels etc. But she paid a price with increasingly debilitating symptoms.
Then, aged 30, Kirstin was told by her doctor she had to stop working. That was a heartache to watch, let alone endure. But as ever, she was brave and uncomplaining and focused on dealing with the new normal.
And the new normal is anything but.
Ok - now for the reality of the situation, and this bit will be grim, but you need to know. For the past few years, Kirstin has been house, increasingly bed bound. She can’t stand or even sit for long without unrelenting symptoms worsening.
Unbelievable as it sounds, her daily symptoms include:
● widespread severe pain
● muscle tremors and electric like shocks
● sudden faints
● loss of speech
● semi-paralysis and seizures
● dizziness and vertigo
● nausea and vomiting
● constant migraines, often with blurred vision
● sensitivity to light and sound
● exhaustion with persistent insomnia
● difficulty swallowing
● appetite loss
● profound memory loss
● brain fog
Other constants are her lifelong love of music and obsession with comedies at every opportunity her condition
(In better days)
The Science Bit
What’s happening in Kirstin’s body is complicated, so here comes the Science bit, let’s get technical. We all have a web of fibrous tissues throughout our bodies - it’s the glue that binds and supports everything. Due to various underlying risk factors, for some people who get a virus these tissues become inflamed longterm.
This is part of what we know as Post Viral Syndrome. Long-term inflammation can then damage the tissues, break down its fibres, and the body’s glue becomes lax and starts to give out, causing complex problems everywhere.
The most dangerous problems are when the laxity spreads to the ligaments in the neck because the head is so heavy. When this happens, as in Kirstin’s case, it's called craniocervical and atlantoaxial instability.
This means her skull, neck and spine are unstable in a number of areas, unable to support the weight of her head. Kirstin’s head is compressing her brainstem, spinal cord, and jugular vein; responsible for automatic functions including heartbeat and breathing.
If she turns her head, the top vertebrae partially dislocates, escalating symptoms further. These cause increasingly serious complications that become life threatening. Just to make an already complex situation more so, all indicators suggest Kirstin also has Occult Tethered Cord Syndrome; a hole in the lumbar spine, similar to a spina bifida.
This means that rather than cushion the spine, tissues from her spinal canal are tethered to the spinal cord itself. Again, this progressive condition comes with serious risks, including paralysis.
Now, that’s a lot to hear in one go. We know because we’ve only recently found this all out ourselves. Getting to this point has taken 30 years! These problems aren’t widely known or understood and medical responses are limited.
There are only three Neurosurgeons in the world with the expertise to attempt this surgery. Therefore, surgery is only considered for the most serious and advanced cases where there are no other treatment options left.
It’s also at great expense. It has already cost thousands to get to this point, but that’s nothing compared to the time and quality of life these illnesses have cost Kirstin.
Worryingly, Kirstin’s condition is advanced. We need your help urgently. We’re fundraising for a lifesaving spinal fusion and a major spinal cord surgery.
We know this all sounds unbearable– and it is. We desperately wish something was done sooner. But the truth is - as a family this is the most hopeful we’ve been for years.
We’ve been swinging at shadows for decades whilst Kirstin’s condition progressed. Leaving us helpless onlookers as it gradually took everything she loved from her.
But it didn’t take her humour, hard-working nature or single mindedness. For decades, she has been relentless in researching. Finally, that research single-handedly found the answers and got us here.
We were preparing for a life when palliative care was the best we could do. But that’s all changed! We need you to help us grab this chance to ultimately save Kirstin’s life and to ensure the rest of her life is of the best quality possible.
With any improvement, Kirstin intends to play a role in significantly improving outcomes for others in a similar position, particularly in the wake of longCOVID.
With that in mind, instead of the traditional SaveKirstin, this fundraiser is called CHRONIC in tribute to the many families who too, are living the daily reality of chronic illness and pain.
We can’t thank you enough for any donation you make. No matter how small it will be big to us. If you can share with others who can donate, or can help run a fundraising event it would mean the world to us. Please, please do share on your social channels.
It’s strange to be writing this, and to have to ask friends, family and strangers for help but needs must, and we really need it.
Thank you from the bottom of our hearts,
Kirstin’s family - Frances (mum), Rory (brother) & Clara (sister)