Weʼre raising £500 to Help local woman Leah get the treatment she deserves to be able to live her life again with her children
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On thursday the 24th of May myself and Mat are attempting the 3 peaks challenge, we begin in Scotland for Ben Nevis, then move down to Scafell pike and on the 3rd day we head for the summit of snowdon.
I have decided to use this opportunity to raise money for Leah, a local 37 year old who after a lumbar puncture 2 years ago has been left lying flat continously and bedbound, leaving her unable to care or spend time with her 5 children. The NHS have again refused to fund her treatment only weeks ago and every day Leah deteriorates. Please read her story and sponsor us to get the treatment she and her children deserve.
Everything began for me in February 2017 when I was taken to hospital with left sided numbness and other scary symptoms, they thought it was a stroke but ruled out then what followed has been nothing short of a terrifying, life destroying nightmare.
On March 22nd 2017 I was given a diagnostic lumbar puncture to see if my problems were caused by multiple sclerosis, the result for ms was negative but this test devastatingly left me with a cerebrospinal fluid leak and now there is no longer enough fluid around my brain to keep it properly afloat so I have to spend most of my life laying down with minimal upright time, the upright time I do get is full of awful symptoms.
I’ve had 3 spinal procedures to try to fix the leak (the last being September 2017) the 3rd helped a bit and by Nov ‘17’ it gave me a little more upright time but sadly a sneeze in May 2018 undid everything and I’ve been back to square one leak wise since then.
Fast forward to now, May 2019... I’ve been on a crazy 2 year journey of discovery trying to figure out what’s actually wrong with me, what’s been causing the neurological symptoms, why the spinal fluid leak won’t heal, why I’m intermittently losing strength, function and sensation in all 4 of my limbs, my tongue, my face, my scalp and other places, why my head intermittently feels like it’s the weight of a bowling ball being held up by a paper straw and so so much more...
I hit dead ends down the NHS route so I had to become my own researcher and started go fund me’s to raise the money to pay for private medical appointments and scans to try to figure out what was wrong.
I now believe I have all of the pieces to my health jigsaw puzzle, or at least most of them.
All of the private medical appointments and scans have lead to the diagnosis of the following...
Ehlers danlos syndrome (Eds)
Intracranial hypotension (Csf leak)
Idiopathic intracranial hypertension (iih)
Atlantoaxial instability (Aai)
Internal jugular vein compression (ijv)
among others but these are the most relevant.
Eds is a connective tissue disorder, in simple terms it means that my collagen (glue) that is supposed to hold my body together is faulty causing my dislocations, subluxations in my neck and rubbish healing.
Intracranial hypotension (low pressure within the skull) is my spinal fluid leak caused by the lumbar puncture 2.5 years ago.
Ironically it’s been found that along with the intracranial HYPOtension (low pressure) I also have underlying intracranial HYPERtension (high pressure) the signs were all there on my early nhs scans but sadly they were missed.
Atlantoaxial instability means that the very top of my spine the C1 and C2 are unstable, this is due to my Eds and again sadly the very last place of your spine you want to be unstable.
The ijv compression means that the blood that flows out of my head through the internal jugular veins is getting blocked (by the unstable C1) this is what I desperately need your help with
The private neuroradiology consultant I saw privately believes this is the underlying reason for the high pressure I am experiencing and the reason that the leak will not be able to heal. The next step in his opinion without doubt is to have my internal jugular veins investigated and depending on the results I will need stenting on both left and right veins and then further surgeries called styloidectomies again both sides.
The cost of the above is just in excess of £30,000.
My Gp applied for cross border independent patient funding from NHS Wales back in December last year, the request was declined so the neuro radiology consultant himself contacted funding and put in an appeal, this was again declined a few weeks ago.
It is now May 2019, my life has been on hold and I’ve been living this nightmare for 2 years and 3 months.
I am so much more than this. I am a friend, a daughter, a sister, an auntie but most importantly I am a mummy, a mummy of my incredible children who are suffering just as much as I am.
During this hell one of my children has been diagnosed with autism and another has recently been assessed, were still awaiting the outcome.
Life has been too hard for too long and we’re all struggling to keep going, my children need their Mummy and I need to be able to look after them.
I am just a normal person and I’m not built to cope with all this by myself, the fear is indescribable. Please please help if you can
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Jun 9, 2019
Well done lovely x
Jun 3, 2019
Great effort and a really touching cause. Well done all, you should be proud of yourselves. 💪
May 27, 2019
Well done Amy on your 3 peaks challenge xxxx what a weekend 🏔🏔🏔
May 25, 2019
Brilliant Amy and Matt. Keep going 🥰
Jem & John
May 25, 2019
May 25, 2019
Well done guys!! Awesome effort 😘🏔💪🏼 Xxx
May 24, 2019
Good luck too you both 🤙🤙
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