Jimmy  Darts

SB Mowing

Pattie Gonia

Little Miss Flint

Kalina Silverman

Samuel Weidenhofer

Patriotic Kenny Foundation

Ben Saunders

The Dogist

Peter Bond

Amy Jandrisevits

Ask Uncle Jack

That Good News Girl

Tess Bohne

FowlMouthFarmer

Latonja and Taylor Richardson

Officer Richard Craig

Flavor Flav

John Wolfe

Khloe

<div>Hi, my name is <strong>Mel Hartshorn</strong> and my story has been shared all over the world since around 2017…
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<div>I have a complex medical history with several rare conditions which cause all of my joints to dislocate easily… and <strong>PAINFULLY!</strong>
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<div>I have spent many years bedbound and graduated with a <strong>biology degree on a stretcher!</strong>
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<div>With the help of many, many <strong>AMAZING PEOPLE like you, I raised the funds to have lifesaving neurosurgery in Barcelona </strong>to prevent seizures, respiratory arrests and enable me to sit up again…. <strong>and live life</strong>!
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<div>Then <strong>tragedy struck</strong> when after a routine knee operation in the UK I found <strong>my neck fusion broken</strong> and was forced to spend<strong> 2 desperate years with a surgical halo</strong> quite literally keeping my head screwed on!!
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<div><strong>Luckily once again you guys- came through and donated in your masses to enable me to have experimental surgery</strong> which had never been done before in this manner, to fuse my first vertebra and T1, from the front of my body- whilst already being fully fused at the back from skull to pelvis!
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<div>It wasn’t easy and was a rough recovery <strong>but it was a huge success</strong>! And since then I’ve been seizure free, had no respiratory arrests, and have even been able to take a few steps on my own two feet… <strong>this was thought to be impossible by most people!</strong>
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<div>I have also been making huge progress towards my <strong>dream of becoming a primary school teacher!</strong>
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<div>Every spare chance I’ve been volunteering and have built my days up to <strong>3 full days a week in years 2,3 and 4… and I LOVE IT</strong>!
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<div>I have also been accepted with flying colours (woohoo!) onto a PGCE course at Sunderland university which I’ve began studying via distance learning, with my placement to begin at the school I’ve volunteered at for years…. <strong>I’m SO EXCITED</strong>!
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<div>This has been my dream since I was a child and I’ve genuinely got my heart set on it…. I’m so close to achieving it but <strong><em>unfortunately I need YOUR HELP AGAIN</em></strong>.
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<div>I recently had surgery for instability at T4 in my spine and I tried recent nerve ablations to prove this was the problem area and see if we could stave off surgery… <strong>however, I rapidly deteriorated and had to rush back to Barcelona</strong> to have T4 fused with new hardware…. Hence the original target on this <strong><em>fundraiser of £25K.</em></strong>
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<div><strong>However the week before surgery I rapidly deteriorated</strong> and when they did the surgery they discovered my <strong>ribs were dislocating at the spine</strong> in all directions on the right hand side.
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<div>It was so severe they were <strong>literally dislocating with every breath</strong>- my surgeon was shocked! He said he’s <strong>never seen this type of instability so severe</strong>.
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<div>We had to schedule an urgent CT and work with a thoracic surgeon on a plan. <strong>The thoracic surgeon identified 4 ribs that need fused to my spine. </strong>
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<div>They are <strong>dislocating each time I move or breathe</strong> and it’s agony. They said it’s so severe it’s usually only seen in <strong>car crash victims! </strong>
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<div>This is why I’m in such horrific pain, and this is why <strong>I’ve been forced to raise the total by about £60,000</strong> (to a total of £85K for both operations) on this fundraiser to cover the cost of the new rib fusion surgery!
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<div><strong>Unfortunately this surgery can only be done for me in Barcelona</strong>, as I already have a full spinal fusion and one of the spinal rods needs replaced to attach to the new rib fusion system…. This means my <strong>neurosurgeon Dr Gilete is needed</strong> during the surgery to do this neurosurgical part alongside the thoracic surgeon.
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<div>And… yet again <strong>time is critical… </strong>
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<div>The specialist thoracic surgeon stated, if we leave <strong>it too long, the instability will worsen and is likely to spread to more ribs</strong>, meaning if need more then 4 fused! Fusing more ribs means more restricted breathing and a less positive outcome for the surgery!
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<div><strong>I’m desperate to get back ASAP before I deteriorate too much</strong>, I’m suffering so much at the moment and my body simply isn’t coping with the pain! My endocrinologist has said all my recent (life threatening) adrenal crisis will be from the severe pain I’m in- so we are having to double dose my steroids. Which has major side effects long term, so she’s hoping I have surgery soon so we can reduce my steroid dose and prevent the long term side effects.
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<div><strong>If we don’t raise the funds fast I’m in big trouble! </strong>
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<div>Thanks again for always supporting me… <strong>My dream of walking and teaching was so close… I’m holding onto the hope that again, we can do this together!”</strong>
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<div>“No dark cloud can forever prevent the sun from shining!”
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<div>Mel x
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Melanies Mission To Live 2025

<div>We never expected to be here again, asking for help.
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<div>The craniocervical fusion surgery and posterior fossa decompression surgery that Jenny had in January 2020 have had a devastating and dangerous outcome. She has been left even more severely disabled and in a relentless intense state of suffering, unable to move her neck and head because it isn’t safe.
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<div><strong>What is wrong?</strong>
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<div>Jenny has Ehlers-Danlos Syndrome (EDS), which is a genetic disorder that causes her to produce faulty collagen. A lot of the human body is made up of collagen so it affects many systems. The biggest problem for Jenny is that the faulty collagen causes the ligaments and connective tissue in her neck to be lax, which means that it can’t support the spine. So the vertebrae and skull move around and subluxate (subluxation is like dislocation). This means that she has CCI (craniocervical instability) and AAI (atlanto-axial instability).
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<div>Jenny’s operation in January was meant to help support the skull and vertebrae below so that they didn’t move around anymore. Other people with M.E. have found that they have the same structural problems and when their instabilities were fixed with a fusion, they were also cured of their M.E. and their reduced blood flow (due to the structural problems), returned to normal when the structure was fixed, and so they instantly had their energy back. So not only was Jenny expecting to wake up from surgery with her life saved from having the structural problems fixed, she thought the severe M.E. would potentially be gone too. Neither of these things happened. In fact, her neck became more destabilised, not only at the fusion site but in additional places all the way down, and the M.E. got worse because the operation blocked the place where she was managing to get a bit more blood through to her head. We all have been devastated.
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<div>What we’ve found out is that, unfortunately, Jenny’s fusion didn’t involve intraoperative traction, which is necessary in some EDS patients to make the fusion effective and curative. Before the operation she should have been tested with invasive cranial traction, where bolts are attached to the skull and then the skull is lifted incrementally by a machine to determine the exact amount of traction that is needed in the fusion and to determine exactly where the skull needs to be placed in surgery. We did not know this before and this test was not done.
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<div>A brilliant EDS-experienced neurosurgeon in America, has proposed what needs to be done for Jenny now, though there are no guarantees. The “fix” that he proposes involves:
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<div>2. Use bolt traction testing to find the exact amount of intra-operative traction needed and the position to place the skull in.
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<div>3. Redo the craniocervical fusion, using his own technique (condylar screw fixation) and using the results of the traction testing to place Jenny’s skull and neck in the correct position with the right amount of traction.
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<div>Unfortunately the fusion in January has caused extra structural problems in the vertebrae beneath the fusion, as well as a suspected tethered cord, so the “fix” above might not solve all the additional problems. These things won’t be able to be determined until Jenny actually gets to the hospital in America and the neurosurgeon does all his various tests and figures out exactly what has happened in her neck and if/what other surgery is needed too. Obviously we need to have the money ready for these surgeries too, as well as raising money for the the three invasive surgeries involved in the “fix”. There would be a gap between the “fix” and any additional surgery that Jenny may need, so we also need to raise the money to stay in America for months, somewhere with a hospital bed for Jenny (and potentially nursing care, depending on what state she’s in after the surgeries), between the “fix” and whatever other surgery might be needed.
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<div>We also need to raise money for Medevac flights to and from America, as that is the only way that Jenny can be transported. It will be very risky for Jenny to be transported at all in her current condition. We also need to raise money for intense rehabilitation and physiotherapy that will be needed afterwards too.
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<div>American healthcare is notoriously expensive with lots of hidden costs. We have been given quotes for some of the procedures and other costs but we’ve been told that until Jenny gets there to hospital, we won’t know precisely what money we need to have available. The sum of money that we’re trying to raise involves our best guesses and estimates for the rest. What we don’t want to happen is to get to America and the neurosurgeon to recommend something that we can’t afford and just be stuck. The amount of money feels overwhelming. It is the only hope that Jenny has though. She is worth it.
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<div>Jenny recently had to go to the NHS, after we had to call 999 as she couldn’t breathe because a vertebra in her neck moved and almost completely obstructed her airway. She stayed five days in hospital and there was nothing the NHS could do for her. They don’t have the specialist knowledge, expertise or experience of this. There are only a handful of neurosurgeons in the whole world who have this specialism. None of whom are in the NHS or in this country.
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<div>Jenny is at death’s door and is trying so hard to stay alive. It feels impossible that she can survive a few more days or weeks like this, let alone the months it might take to raise the money. She is deteriorating constantly. She cannot support her head or neck since the operation and has been horizontal with her head supported by a pillow ever since. She hasn’t been able to move off that pillow since the operation.
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<div>Ever since the operation, there are massive cracks, snaps and clunks from her neck and skull that are accompanied by a movement/subluxation in her vertebrae/skull and they are left in a new position and structure. Each crack is pulling her further in a particular direction.
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<div>Her skull is being pulled downwards and inwards so hard (this is either being caused by a tethered cord or not enough traction) and being jammed into other hard things in her neck, which is intensely painful and unsafe. Whenever she tries to pull her head up and out a little from where it has sunk, the skull just rolls and slides by itself, pinging back down with a force she can’t stop. There is probably severe cranial settling resulting from this vertical AAI.
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<div>Jenny can’t even move a millimetre anymore without a massive crack/subluxation/snap and accompanying movement, without vertebrae being pulled out of their correct position. She can’t move the rest of her body because that causes her head and neck to move or wobble, which causes more cracks and subluxation. She can’t have anyone (or herself) touch her neck or head because even the tiniest amount of pressure against it causes the vertebrae to move wrongly and go further inwards and the skull to sublux, popping inwards.
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<div>Due to her not being able to have anyone touch her and due to not being able to access the back of her head (because both are too dangerous), and due to not being able to lift her head or roll onto her side, nurses and caters haven’t been able to wash her hair since January 2020.. It’s awful for her and we wish we could help her but we’re just left helpless. When she was in hospital, they weren’t able to wash her hair either. It’s hard to be a carer and not be able to meet her basic care needs because it would kill her.
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<div>Jenny used to be able to raise her hospital bed up at an angle with her head and neck supported by the bed and sit like that for a few hours. Now, it’s extremely dangerous for her to raise the bed as the movement causes further damage and deterioration to her neck. It can cause catastrophic changes. Now, she has to try to raise the bed at an angle once every day for as long as it takes to try and get some food down her and then quickly go down again. It’s very unstable and her skull slides off her neck and her neck slides off her shoulders when she’s raised up; the pillow can’t seem to support her head or neck and her skull appears flattened from the piece of skull that was removed for the decompression surgery. Her skull just slips and slides and sinks down the pillow, jamming down on something it shouldn’t be and also cuts off air more. The neck pain is overwhelming (worse than immediately after surgery). Using the bedpan is dangerous too (even though she has to do it while fully lying down, sliding it under her by lifting her hips up; it still moves her head too much). She also now has frequent urinary incontinence since the operation.
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<div>It feels like an impossible amount of money to raise but, as Jenny has communicated to us, she’d rather try and fail than not try at all. She would rather die trying than just slowly die doing nothing.
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<div>In full transparency, the neurosurgeon has warned us that there are no guarantees of a successful outcome and that the outcome of good clinical results are less likely than it would be if it were her first surgery. But she can’t be left suffering this intensely. She can’t be left like this. Every second is unbearable; she can’t cope. We need to try to fix it. This is the only option left to us. We need a miracle to raise this kind of money. Any contribution, however small or large, we’d be eternally grateful for.
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<div>Please share the fundraising link far and wide with your contacts and on social media. Thank you so much, in advance.
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<div>Jenny desperately wants to stay alive and regain an acceptable quality of life. 
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<div>This is a video of what Jenny’s life was like before she became ill: 
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<div class="youtube-replace"><a href="https://youtu.be/MwT-zAcJ0EA?si=kgffrbPqRgJFNptU" target="_blank" class="" rel="nofollow noopener noreferrer">https://youtu.be/MwT-zAcJ0EA?si=kgffrbPqRgJFNptU</a>
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<div>This video shows a fraction of what Jenny’s daily life is like now: 
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<div><a href="https://youtu.be/j09KuknjrXY" target="_blank" class="" rel="nofollow noopener noreferrer">https://youtu.be/j09KuknjrXY</a>
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<div>A<strong>bout Jenny Rowbory:</strong>
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<div>Jenny Rowbory is 38 years old and very much wants to stay alive!
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<div>She has been severely ill and bed-bound for 20 years after suddenly becoming ill in her first term at university. She’s been diagnosed with very severe, multi-systemic Myalgic Encephalomyelitis for most of this time but it wasn’t until 2015 that she was also diagnosed with EDS and it wasn’t until May 2017 that she began to get overt symptoms of instability of the cervical spine and atlas, with numbness, temporary paralysis, lymphatic fluid stagnation and severely impaired blood supply to her head, neck and later, the whole body. In October 2018 she was diagnosed with AAI (atlantoaxial instability) and CCI (craniocervical instability), which have continued to deteriorate. The reduced blood and lymph circulation to the whole body has continued to diminish as a result.
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<div><strong>A bit more about Jenny:</strong>
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<div>Jenny is a poet. Her poetry collection ‘We Are The Winter People’ is raising money for the surgery too. It’s available as a paperback, audiobook and ebook <a href="https://mybook.to/WinterPeople" target="_blank" rel="noreferrer noopener">here. </a>
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Jenny Can’t Be Left Like This

<p><b>Help Connor in his battle against Craniocervical Instability and Ehlers Danlos Syndrome</b> 
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<p>Hello everyone, 
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<p>My name is Connor Edwards, and I am a 30-year-old individual from the UK. 
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<p>Today, I am reaching out to you with a heavy heart and immense hope for your support. 
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<p>Unfortunately, I have been diagnosed with a genetic disorder 
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<p>called <a href="https://www.nhs.uk/conditions/ehlers-danlos-syndromes/target=_blankrel=noreferrer" target="_blank" rel="noreferrer noopener">Ehlers Danlos Syndrome</a> (EDS). This disorder is causing all of body’s connective tissues - my skin, tendons, ligaments, blood vessels, internal organs, and bones - to weaken, and is incredibly painful. Ehlers Danlos Syndrome can also lead to comorbid disorders (conditions that develop as a consequence of the underlying disorder). One of these conditions is called <a href="https://www.eds.clinic/articles/craniocervical-instability-symptoms-causes-and-treatment-optionstarget=_blankrel=noreferrer" target="_blank" rel="noreferrer noopener">Craniocervical Instabilit</a>y (CCI). There is no treatment pathway for CCI on the NHS, and limited support for EDS. 
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<p>My MP Josh Newbury raised my case to the Prime Minister <a href="https://www.gov.uk/government/people/keir-starmertarget=_blankrel=noreferrer" target="_blank" rel="noreferrer noopener">Sir Keir Starmer</a> earlier this year: 
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<p>Due to the lack of NHS support I have no choice but to appeal to the general public in hope of raising £66,000 for private surgical treatment abroad. For a cost breakdown please scroll to the end of this page. 
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<p><b>Why is the surgery not available on the NHS?</b> 
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<p>Currently the NHS are in the midst of conducting a <a href="https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/craniocervical-imaging-in-joint-hypermobility-disorders-version-1/target=_blankrel=noreferrer" target="_blank" rel="noreferrer noopener">study</a> using upright dynamic MRI imaging to access the presence of craniocervical junction abnormalities in patients with hypermobility spectrum disorder or hEDS (hypermobility Ehlers Danlos Syndrome). This study might one day lead to larger surgical trials that would help deliver improved care to highly disabled patients. However, when this study is expected to conclude, and whether it will lead to surgical trials in the UK, is unclear. 
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<p>Some years ago, world renowned CCI expert neurosurgeon <a href="https://metropolitanneurosurgery.org/dr-fraser-henderson/target=_blankrel=noreferrer" target="_blank" rel="noreferrer noopener">Dr Fraser Henderson</a> was invited to the UK to offer his expertise with the potential to then assist UK neurosurgeons in a trial study. Sadly, the study didn’t go ahead and concrete reasons as to why this was the case are unknown. 
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<p>The lack of an NHS treatment pathway, was raised at a recent NHS conference in Liverpool. Neurosurgeons debated how best to analyse MRI scans for Craniocervical Instability, after being presented with the latest research by world renowned expert and neurosurgeon Dr Paolo Bolognese. They agreed that further research and clinical studies were needed in the UK, however concrete plans as to when these would take place were not divulged.
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<p><b>Why is the surgery not available privately in the UK?</b> 
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<p>A small number of CCI fusion surgeries for EDS patients have been performed in the UK in the <a href="https://www.leeds-live.co.uk/news/leeds-news/woman-fear-head-detach-body-18087487target=_blankrel=noreferrer" target="_blank" rel="noreferrer noopener">private sector</a>, but currently there is no provision privately or in the NHS. 
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<p>Due to the above UK patients have no clear treatment pathway. If conservative measures such as physio, pain relief, and pain management have failed to work there are no other options available. 
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<p>Craniocervical Instability has robbed me of my independence. I cannot even tolerate sunshine, light or sound without feeling pain. I am afraid my body is giving up. 
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<p>I am wholeheartedly appealing for your assistance and contributions to help me reach my fundraising goal. Your kindness will play a significant role in helping me receive the treatment I desperately need. Please, join me on this challenging journey and help me spread awareness about the hell that is Craniocervical Instability. 
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<p>No amount is too small. Every single contribution is hugely appreciated. Please consider donating and sharing my story with your friends, family, and social networks. Together, we can make a difference! 
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<p>Connor x 
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<p><b>Cost breakdown for surgical care in Barcelona, Spain:</b> 
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<li>Posterior fusion stabilization C0 to C2 with intraoperative reduction (traction) - 59,000.00 € 
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<li>Blood recovery machine (optional) - 2,500.00 € 
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<li>Hyperbaric chamber 5 sessions - 375.00 € 
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<li>Allograft bone material - 2,100.00 € 
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<li>Complication Insurance - 6,000.00 € 
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<li>Comorbidity Deposit (fully refundable) - 5,000.00 € 
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<p><b>TOTAL: 75,000 € (£66,000)</b> 
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Stability for Connor

<div>I will be climbing Mount Tauhara every day for 15 days, which will be the equivalent elevation of Mount Everest, at 8848 meters high. I will be hiking from the 18th August to 1st September. 
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<div>The hike is a very steep incline and challenging terrain, it will take me 2.5 hours to return each day. At the top there are stunning vistas of Mount Tongariro and Mount Ruapehu which are currently covered in snow, given that it is winter here in New Zealand. I will mostly be walking early in the mornings (cold and frosty!) but some days I will do it after I finish work which will be a late afternoon sunset hike (cold and dark!).
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<div>I am undertaking this challenge to raise money for my dear friend Holly, who has very recently undergone urgent craniocervical surgery, which is a fusion of her skull and neck. This is due to Holly's Ehlers Danlos Syndrome which is a connective tissue disorder caused by faulty collagen genes. I’ve known Holly for 16 years and throughout she has lived with and struggled with severe chronic nerve pain caused by her conditions which have intensely increased over recent years to the point where life had become extremely challenging and at times unbearable for her.
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<div>Over the 16 years of our friendship we have experienced a lot together and I love her dearly. It has been so sad and painful to see her in such agony over the years. And especially now, while I am so far away in New Zealand, I wanted to do my part to support her and fundraise towards her operation.
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<div>Neither the NHS nor private sector in the UK perform these fusion operations currently, so after much consultation within the UK, Spain and the US, Holly decided to go ahead to America to have her operation, which of course came at a huge cost, around £150k. Holly had her operation very recently and thankfully it did go very well and it has drastically decreased the amount of pain she is in. She is still in the US recovering and will have to travel there again in November for further check ups. Holly has her own fundraising page (linked here) if you want to have a look at her more detailed story or donate directly there. Holly also recently had the Telegraph newspaper share her story which you can read here.
</div>
<div><br />
</div>
<div>I have set up this fundraiser to ask my friends and loved ones to support me in my physical challenge to hike to raise funds for Holly. If you feel able, please do donate below, or if not, please share with your friends and family to support Holly.
</div>
<div><br />
</div>
<div>I think I am going to find this daily hike a challenge, as I am also working every day in the meantime so I will be fitting it around that. I know it will take a physical toll on my body but it is something I want to do and know that I can do. I really appreciate everyone taking the time to read this, and sharing my journey. I will be documenting my journey as I go and sharing here.
</div>
<div><br />
</div>
<div>Thank you so much!
</div>
<div>Indi
</div>

Support Indi's hike for Holly's Operation

<div>Hi everyone, my name is Rebecca and I am fundraising on behalf of my partner Maisie.
</div>
<div><br />
</div>
<div>Maisie is 25 years old, from Twickenham and she is in urgent need of help. In 2021, she fell and sustained a traumatic neck injury called CCI (<a href="https://www.eds.clinic/articles/craniocervical-instability-symptoms-causes-and-treatment-options" target="_blank" rel="noreferrer noopener">Craniocervical Instability</a>). Over time Maisie's condition has deteriorated and she is now primarily bed-bound, unable to work or care for our young daughter.
</div>
<div><br />
</div>
<div>Maisie needs urgent fusion surgery to stabilise her neck but this is not available on the NHS, and is no longer available privately in the UK. For an explanation as to why this is the case please refer to our <a href="https://www.maisiesmissiontolive.co.uk/faqs" target="_blank" rel="noreferrer noopener">FAQ</a>.
</div>
<div><br />
</div>
<div>Maisie has been suffering now for 4 years. She spends most of her time bedridden with excruciating headaches, blurred vision, vertigo and memory loss. She wants nothing more than to get her life back, go out and spend time with her family, and play with her daughter.
</div>
<div><br />
</div>
<div>For this to be a possibility we need your help. We need to fundraise £45,000 for urgent treatment overseas.
</div>
<div><br />
</div>
<div>The only countries that currently treat her condition are Spain and America. Spain is closer and cheaper, and given Maisie's fragile state it will be easier to transport her to Barcelona by car rather than fly her to the US.
</div>
<div><br />
</div>
<div>Barcelona has an <a href="https://drgilete.com/about-us/teknon-hospital/" target="_blank" rel="noreferrer noopener">award</a> winning medical centre run by expert <a href="https://www.neuroinstitut.es/en/drbartolomeoliver" target="_blank" rel="noreferrer noopener">neurosurgeons</a> specialising in Craniocervical Instability. There are only a small handful of these specialists in the whole world.
</div>
<div><br />
</div>
<div>Maisie is young and has her whole life ahead of her. Surgery gives her hope, a chance to bring up her little girl. As her partner it is heartbreaking to see her like this.
</div>
<div><br />
</div>
<div>Please help us by donating, supporting us with our community efforts, or sponsoring us as a company (any company that sponsors us will be mentioned on our website and social media).
</div>
<div><br />
</div>
<div>If you are not in a position to do the above please <strong>SHARE</strong> our story
</div>
<div><br />
</div>
<div>It would mean the world to us! The more our story is shared the more people we reach.
</div>
<div>Every little bit helps and will be greatly appreciated!
</div>
<div>If you want to get involved in our fundraising effort please email us.
</div>
<div>Same goes for sponsorship or press.
</div>
<div><br />
</div>
<div><br />
</div>
<div>*<strong><em>IMPORTANT</em></strong>*
</div>
<div><em>There is a possibility that we will incur additional medical costs. Maisie has been on the waiting list for a long time and hospital fees are predicted to increase in March 2026. Maisie might also need a more extensive surgery (long fusion) as time drags on. Every day that we delay treatment Maisie deteriorates, risking further irreversible damage to her body, and larger medical bills. </em>
</div>
<div><br />
</div>
<div><strong>You can follow Maisie's Journey on Instagram &amp; TikTok</strong>
</div>
<div><a href="https://www.instagram.com/maisiesmissiontolive/" target="_blank" rel="noreferrer noopener">Instagram</a> @maisiesmissiontolive
</div>
<div><a href="https://www.tiktok.com/@maisiesfightforlife" target="_blank" rel="noreferrer noopener">TikTok</a> @maisiesfightforlife
</div>
<div><br />
</div>
<div><a href="https://www.maisiesmissiontolive.co.uk" target="_blank" rel="noreferrer noopener">Maisie's Website</a> (<a href="https://www.maisiesmissiontolive.co.uk" target="_blank" rel="noreferrer noopener">www.maisiesmissiontolive.co.uk</a>)
</div>
<div><br />
</div>
<div>Thank You.
</div>
<div><br />
</div>
<div><strong><em>Links to news articles:</em></strong>
</div>
<div><br />
</div>
<ul>
<li><a href="https://www.mylondon.news/news/west-london-news/bedbound-twickenham-mum-left-55k-31585273?utm_medium=Social&amp;utm_source=Facebook&amp;fbclid=IwY2xjawKIvjVleHRuA2FlbQIxMABicmlkETBydGs2U3ZhS3VzRjRKdEhVAR5UZxkLQ4DQAbWoEeLq3WnRGIIq82rLhlKQkNF1fFwXhjJgaGmpjmrQZjwpUw_aem_Ro6yieiCUKwIJ52W0Lmn7Q#Echobox=1746637165" target="_blank" rel="noreferrer noopener"><strong>My London News</strong></a>
</li>
</ul>
<div><br />
</div>
<ul>
<li><a href="https://twickenham.nub.news/news/local-news/twickenham-mother-urgently-fundraising-for-life-saving-spinal-surgery-256515?fbclid=IwY2xjawKIvn1leHRuA2FlbQIxMABicmlkETBydGs2U3ZhS3VzRjRKdEhVAR7IBCa5vP7qJHKCjrQ0PM5ykusQ3Ju0QVOUm5CVpVeLeCdPYrclW5iN4wtr8Q_aem_rKAuVEVHIl02vt36GJus2A" target="_blank" rel="noreferrer noopener"><strong>Twickenham Nub News</strong></a>
</li>
</ul>
<div><br />
</div>
<ul>
<li><a href="https://www.mirror.co.uk/news/uk-news/doctors-told-pain-anxiety-turned-35378732" target="_blank" rel="noreferrer noopener"><strong>The Mirror</strong></a>
</li>
</ul>
<div><br />
</div>
<ul>
<li><a href="https://www.dailymail.co.uk/news/article-14785233/Doctors-told-anxiety-turned-away-Im-bedridden.html" target="_blank" rel="noreferrer noopener"><strong>Daily Mail</strong></a>
</li>
</ul>
<div><br />
</div>
<ul>
<li><a href="https://www.swlondoner.co.uk/news/24092025-twickenham-mum-hopes-to-raise-45k-for-life-changing-surgery-in-spain" target="_blank" rel="noreferrer noopener"><strong>SWLondoner</strong></a>
</li>
</ul>
<div><br />
</div>
<ul>
<li><a href="https://www.express.co.uk/news/uk/2137208/Young-Britons-beg-health-secretary-for-150k-neck-ops-abroad" target="_blank" rel="noreferrer noopener"><strong>Daily Express</strong></a>
</li>
</ul>

Help Maisie Get Life-Saving Surgery

<p>Hi, 
</p><br />
<p>My name is Holly. 
</p><br />
<p>If you could please take a moment to read this message I would be most grateful. 
</p><br />
<p>I am currently very poorly and under the care of US Neurosurgeon Dr Fraser Henderson who specialises in craniocervical junction fusions for people with severe forms of Ehlers Danlos Syndrome (a connective tissue disorder caused by faulty collagen genes). EDS is very poorly understood and there are limited treatment options in the UK, especially for complex cases, so I had to fly to America for my care. 
</p><br />
<p>MRI and CT imaging have confirmed I have Craniocervical and Atlantoaxial Instability in my neck causing my spinal cord to be abnormally stretched and compressed, leading to cervicomedullary syndrome. You can read a more detailed explanation in the medical reports attached to this fundraiser or by clicking <a href="https://www.eds.clinic/articles/craniocervical-instability-symptoms-causes-and-treatment-options" target="_blank" rel="noreferrer noopener">here</a>
</p><br />
<p>The above is causing me to be in huge amounts of pain which I have been living with for 14 years, and is only becoming progressively worse. At its onset I had only musculoskeletal pain, but over the years it has progressed to neuropathic pain in my face, head, eye (effecting vision), left arm and left leg. More recently I have developed weakness/numbness down the left side of my body and neurological tremors (dystonia). 
</p><br />
<p>The recommendation is a craniospinal fusion and stabilization from the Occiput (skull) to C2, a bilateral Occipital neurectomy and left C3 neurectomy. In the future further surgery might be necessary to fuse my spine from C2 down, but for now it has been recommended we avoid this. 
</p><br />
<p>As you can imagine my current symptoms and the recent findings are quite scary. But I am on my last leg, quite literally, and willing to try anything to avoid the progression of this condition, and to have some relief from the chronic pain. 
</p><br />
<p>My quality of life is very poor. I post photos of me smiling, with my friends or family, or in nature, but on the inside I am struggling immensely. Ehlers Danlos Syndrome has frankly robbed me off a normal life. 
</p><br />
<p>I am a very resilient person and I will not let this condition break me. I will fight it. 
</p><br />
<p>This brings me to you. I need your help!
</p><br />
<p>The National Health Service does not, at present, perform Craniocervical fusions on people with Ehlers Danlos. The UK private sector did perform them until a few years ago, but later stopped. 
</p><br />
<p>Currently the NHS are in the midst of conducting a <a href="https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/craniocervical-imaging-in-joint-hypermobility-disorders-version-1/?fbclid=IwY2xjawNwkMZleHRuA2FlbQIxMABicmlkETBJYURvbjRaSXlPQzhMeW1kAR71mWRNdWmnp6AlietZYcPgeN214XjpYx_y7O3ssWTn6SvoMLjSFaw7oo55rA_aem_0oljqJaoi0VdfDf-sBpmvgtarget=_blankrel=noreferrertarget=_blankrel=noreferrer" target="_blank" rel="noreferrer noopener">study</a> using upright dynamic MRI imaging to access the presence of craniocervical junction abnormalities in patients with hypermobility spectrum disorder or hEDS (hypermobility Ehlers Danlos Syndrome). 
</p>
<p>This study could lead to larger surgical trials that would help deliver improved care to highly disabled patients. However, when this study is expected to conclude, and whether it will lead to surgical trials, is unclear. I tried reaching out to the researcher conducting it but sadly had no reply. 
</p><br />
<p>​Some years ago, US neurosurgeon Dr Fraser Henderson was invited to the UK to offer his expertise with the potential to assist UK neurosurgeons in a trial study. Sadly, the study didn’t go ahead and concrete reasons as to why this was the case are unknown. 
</p><br />
<p>The lack of an NHS treatment pathway, was raised at a recent <a href="https://www.thewaltoncentre.nhs.uk/syringomyelia-2025/target=_blankrel=noreferrertarget=_blankrel=noreferrer" target="_blank" rel="noreferrer noopener">NHS conference</a> in Liverpool. Neurosurgeons debated how best to analyse MRI scans for Craniocervical Instability, after being presented with the latest research by US neurosurgeon Dr Paolo Bolognese. They agreed that further research and clinical studies were needed in the UK, however concrete plans as to when these would take place were not divulged. 
</p><br />
<p>The above has resulted in UK patients having no clear treatment pathway. If conservative measures such as physio and pain relief medication and injections have failed there is nothing else left for us. We inevitably are left in debilitating pain, and forced to go abroad at a huge cost to ourselves and our families. In most cases we are having to resort to fundraisers or borrowing. 
</p><br />
<p>This brings me to disclosing my own financial situation as I feel that's only right. 
</p><br />
<p>I am currently on sick leave but usually I work part time as an administrator and activities coordinator at the Royal Hospital for Neuro-disability. Over the last year I have had to substantially reduce my hours due to pain and this of course has impacted my salary. Now that I'm on long term sick leave and have exhausted reasonable work place adjustments I will be officially dismissed on the grounds of capability on August 4th. Until that happens my salary has been halved. Unfortunately I don't have any savings. 
</p><br />
<p>My own situation aside I feel it right to mention that I have a hugely supportive family. They support me emotionally as I navigate my health problems, and financially with groceries and medical bills. I am currently spending thousands a month on consultations, scans, blood tests, physio, medications, the list goes on. The NHS despite it's best efforts won't cover it all and my health is deteriorating fast. 
</p><br />
<p>My Dad recently sold his house and is putting all the sale money towards the operation, travel abroad, accommodation abroad, and post op care. This has put huge financial strain on both him and his partner who we both live with. The op, after care (specialist physio, equipment to help with fusion/bone healing) and travel/accomodation comes to around 150 grand. Even with Dad and extended family contributing every £ they have we are still far short of our target. 
</p><br />
<p>I feel tremendous guilt asking my family to spend this kind of money. I wish I could live an independent life where I could provide for myself and live without debilitating pain. I know my family love me and would do anything to help me but I feel this guilt never the less. 
</p><br />
<p>For this reason I have decided to start a gofundme. It will help me help my parents, even if only a little. 
</p><br />
<p>I would be hugely grateful if any of you reading this could donate. Even £1. It all adds up. If you are not in a position to donate (I know times are tough) then please share my gofundme as widely as you possibly can, and use any contacts you have to help me. 
</p><br />
<p>With so much gratitude and love! 
</p><br />
<p>Holly xx 
</p><br />
<p>P.s I want to add that I appreciate and love the NHS very much. They have cared for me since I was a teen providing me with medications, consultations with various specialists, and pain management programs. I am incredibly grateful for the treatment I have had up to this point. I am also very proud to have worked in the NHS. It is truly a wonderful institution. 
</p>
<p>Unfortunately though there is limited treatment for EDS and CCI. It took a very long time to get my diagnosis and access appropriate care, and there is still so much more research needed. One day I hope research will lead to improved NICE care guidelines, surgical treatments for advanced cases of CCI, and a better understanding within the medical community and wider society on the complexity of this condition and its comorbid disorders. 
</p><br />
<p>LINKS: 
</p><br />
<p>The Telegraph very kindly covered my story which you can read <a href="https://www.telegraph.co.uk/health-fitness/conditions/bones-joints/ehlers-danlos-syndrome-surgery-nhs/target=_blankrel=noreferrertarget=_blankrel=noreferrer" target="_blank" rel="noreferrer noopener">here</a> 
</p><br />
<p>CCI Fund Advocate and PR expert Sharon Niessen, Daily Express Health editor Lucy Johnston and myself did a piece for the Sunday Express highlighting the systemic barriers to care, and recent Parliamentary progress. You can read our work <a href="https://www.express.co.uk/news/uk/2137208/Young-Britons-beg-health-secretary-for-150k-neck-ops-abroadtarget=_blankrel=noreferrertarget=_blankrel=noreferrer" target="_blank" rel="noreferrer noopener">here</a>. 
</p>

Help Holly get her head screwed on

Holly McConnell

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Holly McConnell

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Melanies Mission To Live 2025

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Support Indi's hike for Holly's Operation

Help Maisie Get Life-Saving Surgery

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Holly McConnell

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