I’ve made two brief videos (both of them are under 3 minutes), of my highlights of the World Cup so far, at these early stages of the competition. For those of us in Europe, many matches are in the middle of the night due to the time difference, so I’ve made these videos for people to catch up on all the best bits and interesting little tidbits that have happened so far. I listen to the games on BBC Radio 5 Live (I’m not able to watch them on TV/devices because of my neck). Due to the ~48-76 hour medical schedule that I have to stick to, in order to keep myself alive, and to keep my body functioning (until I raise enough money for the surgeries), the timings of the games in the USA actually work out pretty well for me, since I’m not running on a 24 hour day. Here are the videos:

Part 1 (my highlights of the first 5 games that I listened to):
https://youtube.com/shorts/3JJvgd6gxc4

Part 2 (my highlights of the second 5 games that I listened to):
https://youtube.com/shorts/vHDcXP4YsRo

These videos were both made before the first England game happened! I’ve posted these videos on YouTube, Instagram, TikTok and Facebook. They include a message at the end that says ‘if you enjoyed this video, please consider donating to my life-saving neurosurgeries at https://gofundme.com/savejenny’ so hopefully these videos will raise some money too.

If you would like to hold a fundraising event or do a fundraising challenge to raise some money towards my surgeries, I would be very grateful. Thank you for all your kind and generous support so far.

Although my story has been on the local BBC news, in the local papers and radio, what we really need is a responsible journalist to help my story reach a national (or international!) level. My Mum has written to hundreds of journalists, organisations, public figures, and politicians, over these last six years, but we usually do not get a response. There is a Cannock politician, MP Josh Newbury, who has a constituent in a similar position to me, who has raised a question in parliament about the appalling situation that people like me face, where there is no help available in this country. Any change in response to that will take decades however, which will be too late for me. So we still need to raise the money.

Wouldn’t it be amazing if a footballer or pundit were to hear about my story and spread the word during the World Cup, to get me to the USA for these surgeries!

As a reminder, here is the link to my video that explains what is wrong with my neck, what I have to do every day to stay alive, and why it is getting more urgent that I get this neurosurgery as soon as possible:
https://youtu.be/4XbNiqMCMns

<p>The post The World Cup and fundraising update! first appeared on Jenny Rowbory.</p>

We’ve thought of a way to break it down and make the target achievable. We just need 400 people, 400 of you who are reading this, to try to raise £1000 each in the next 40 days before I turn 40 on the 29th April.

Whether you do that through a bake sale, a pub quiz, a walk, a run, a cycle, a swim, a sail, a danceathon, a coffee morning, a mini golf tournament, a raffle, a knitathon, hosting a meal and charging per head, a concert, a talent show, or a fundraiser of your own choosing, is up to you. Or you could do a combination of these.

So that we know how many of you are doing this, please leave your name in a comment on this blog post, if you are going to be attempting to raise £1000.

My fundraising page is https://gofundme.com/savejenny

If you would rather donate via cheque (this would also avoid GoFundMe taking out any fees from your donation), please make your cheque payable to:
J K ROWBORY
(please make sure that you spell the surname correctly; it’s an unusual spelling)
and send it to the following P.O. Box address (this P.O. Box will only be available for a couple of months):

Jenny’s Neurosurgery Fund
PO Box Number 109,
MACHYNLLETH
SY20 0AS

If you would like an acknowledgement of the safe arrival of a postal donation, please enclose an address to which my Mum can send a reply. We will add the amount donated by your cheque as an ‘offline donation’ to the online fundraising page, to add to the total. Please let us know if you would like your postal donation to be anonymous or please state the name under which you would like it publicly displayed on the fundraising page.

If you need a video to show or explain to people what you are raising money for, you can share this video with them, which explains what is wrong with my neck, what I have to do every day to stay alive, and why it is getting more urgent that I get this neurosurgery as soon as possible:
https://youtu.be/4XbNiqMCMns:

That video will answer every question that you have. It’s also the first pinned video on my profile on Instagram (here: https://www.instagram.com/jennyrowbory), TikTok (here: https://www.tiktok.com/@jennyrowbory) and Facebook (here: https://www.facebook.com/JennyRowbory) so you can share the video from there, if need be.

We can do this together! It’s very achievable if just 400 people try to raise £1000.

Thank you so very much.

Feel free to use this photo of me at your fundraising endeavours:

<p>The post 40 days until I turn 40: we need just 400 people in order to reach my fundraising target for life-saving neurosurgery first appeared on Jenny Rowbory.</p>

It’s a bit late, but Happy New Year! I have something exciting to share with you today. First though, apologies for the lack of updates; it’s been a hard and unpleasant year so far. I have been plugging away with fundraising through videos on social media, mainly YouTube (this is my channel: https://youtube.com/@jenny.rowbory ) and TikTok (here: https://www.tiktok.com/@jennyrowbory ) and Instagram (here: https://www.instagram.com/jennyrowbory ), where it is an uphill struggle to try and build a platform and community, so I’d appreciate any follows and engagement on those accounts to help with the algorithms, and therefore with fundraising! I mainly talk about books, films and TV on those accounts and I usually end each video with a fundraising message.

There is a bigger fundraising plan in the works coming later this month since I am turning 40 years old at the end of April and I’m desperate to reach the target fundraising amount by then. So we’re going to have a big push before then (the idea is tied in with the number 40!) and we’ll let you know more about the plan soon.

For today though, I have a new video of a duo of original poems by me, collectively called ‘Suite of the Moon and Sun’. It is here on YouTube:

Individually the poems are called ‘When Winchester Cathedral swallowed the moon’ and ‘When Winchester Cathedral swallowed the sun’. I hope that you find them meaningful, helpful and thought-provoking. They were inspired by when the artist Luke Jerram’s travelling artworks ‘Museum of the Moon’ and ‘Helios’ were installed for a while in Winchester Cathedral. My aunt, Viv Ferris, who volunteers as a guide at the cathedral, sent me a photo of ‘Museum of the Moon’, which was the instigation of my inspiration for these poems. I hope that you enjoy them, and in this world of short-form content and short attention spans, I hope that you can find a few minutes to listen to them. I will share the video of the poems on most social media, so you can share or repost the video on whatever social media platform that you are on.

Thank you so much for your continued support and I am so grateful for all the donations. It doesn’t go without notice that there are many people who regularly donate; thank you so much for your generosity. You keep hope alive.

<p>The post First update of 2026, new poems, and fundraising update first appeared on Jenny Rowbory.</p>

 
Happy October! Please join in with Orangetober this month: every time you see something orange, take a photo of it and post it online, along with a brief explanation. You can use your own words or you can copy and paste the following to put with each of your photos:

I’m taking part in Orangetober. Whenever I see something orange this October, I’m taking a photo of it, and asking you to consider donating to Jenny Rowbory’s lifesaving neurosurgeries https://gofundme.com/savejenny You can watch a video about the situation with her neck, why she needs to raise money urgently, and what she’s having to do every day to stay alive here: https://youtu.be/4XbNiqMCMns

Thank you! We are so grateful for your continuing support, especially as things are getting increasingly tough. We hope that you have fun spotting the colour orange in your everyday lives this October! It will bring us so much hope if you join in with the challenge. Invite your friends to do it too! Thanks again. 🧡🧡🧡

<p>The post Orangetober first appeared on Jenny Rowbory.</p>

 
Today in Prime Minister’s Question Time, a Member of Parliament raised a question about one of his constituents who, like me, has neck instabilities caused by EDS and is also having to crowdfund for treatment overseas because there is nothing available on the NHS for us. There are thousands of people in the same boat. Just hearing this question raised in parliament was incredible. I’ve been consistently ignored by my own MP so it was refreshing to see this.

Mum has immediately sent off an email to the MP that asked the question to tell him about me and to ask him to keep us up-to-date on any developments or if the government are going to set anything in motion or if he can help in any way.

It would take years to train up neurosurgeons in this country and get the specialist equipment into our hospitals in the UK (there’s no hospital in the UK with the equipment needed to determine the amount of intraoperative traction needed for complex EDS patients). So it’s unlikely that this will help my situation personally but it’s great that the process has potentially been started for people like me in the future. I’m guessing that the government are not going to financially contribute to individuals currently fundraising because there are so many people who need these operations overseas. It’s unlikely. Given that there’s no help available to us on the NHS, I wish that they were legally required to fund the treatment that we need abroad. We’ll see what happens.

So I’ll still have to raise the money by myself. This MP seems willing to fight for his constituent. I’m not his constituent so I don’t know if he’ll be able to help me but we’ll wait to see if he replies to our email to see if he can help at all. Meanwhile, we keep fundraising (at gofundme.com/savejenny)

To see the question in parliament and the Prime Minister’s answer, go to time stamp 13:15 of the following YouTube link: https://www.youtube.com/live/aJ-x3Qy1WhA?si=MFiNmC7qm-fwU-Zm

Thank you to Simon Meadows for bringing these PMQs to my attention. We would have completely missed it otherwise!

Here is the video that explains what is wrong with my neck, details of the surgery that I need, my everyday bed-bound life as I fight to stay alive, and why it is getting more urgent that I get this neurosurgery as soon as possible:

<p>The post A question raised in parliament about EDS patients with neck instabilities who have to crowdfund for treatment overseas because there’s no help available on the NHS first appeared on Jenny Rowbory.</p>

We ask that you donate the price of a “ticket” on her fundraising page here: https://gofundme.com/savejenny – simply donate however much you think the performance is worth after viewing it. Even if you don’t usually like poetry, Jenny’s performances will change your mind! She’s truly talented. Hopefully the video will touch you; it will make you laugh and make you cry.

It has also been a labour of love to make the video and, given the state that Jenny is in, she has pushed herself further than she should, at great physical cost, in order to provide a stunning experience for you all, to raise money.

With some of the poems, Jenny performs them straight to camera; with other poems, she has used video footage that her late father filmed when he was on his walks, and she has done a voice-over of those poems.

We thought it would be lovely if we all pressed ‘play’ on the video at the same time, so that we are all watching the video at the same time. We invite you to start watching at 7pm on Friday 18th July 2025 (BST – British Summer Time). It would be wonderful if you could leave a comment on the YouTube video to let us know that you are there, and to leave a comment on the video saying which of the poems performed is your favourite – Jenny especially would like to know this.

The video is unlisted on YouTube, which means that you’ll be getting your money’s worth because the general public won’t be able to see it, only people who have been given the following link: https://youtu.be/XG0watkxXSM (this is where you can watch the video).
We trust you all to be honest and donate the price of the “ticket” if you watch the video. Please do share the link with others, explaining about giving a donation if they watch the video.

The video will be available both before and after 7pm on 18th July, in case you’re not available at that specific time to watch it together as a community, supporting Jenny’s fundraising effort.

Thank you so much for all your support and kindness. Jenny hopes that ‘A Summer Night’s Dream of Poetry’ will be a balm for your soul.

The running order of poems in the programme:

• Jabberwocky by Lewis Carroll
• I Know Why The Caged Bird Sings by Maya Angelou
• An extract from ‘i carry your heart with me’ by e.e. cummings
• ‘Tis a fearful thing by Yehuda HaLevi
• A Better Resurrection by Christina Rossetti
• Why English is so Hard by Unknown
• The Way Through The Woods by Rudyard Kipling
• Invictus by W.E. Henley
• All That Is Gold Does Not Glitter by J.R.R. Tolkien
• Sonnet 29 by William Shakespeare
• For Right Now by Jenny Rowbory

Here is the video that explains what is wrong with Jenny’s neck, details of the surgery she needs, her bed-bound life, and why it is getting more urgent that she gets this neurosurgery as soon as possible:

A book of Jenny’s collected poems ‘We Are The Winter People’, which is also raising money for her surgery: https://mybook.to/WinterPeople

<p>The post A Summer Night’s Dream of Poetry with Jenny Rowbory first appeared on Jenny Rowbory.</p>

Summer Reading Challenge:
try to read (or listen to via audiobook) as many books as possible over the summer and get friends/family to sponsor you per book that you manage to read, all in order to raise money for my urgent neurosurgery. So for every book that you read over the summer, others can sponsor you a certain amount of their choosing, or an overall total amount to sponsor you. They can either donate straight onto the fundraising page (https://gofundme.com/savejenny or you can print out the Summer Reading Challenge Sponsor Form below for them to fill out, and then you collect the money from them when you’ve completed the challenge, and donate it.

Book recommendation videos that I’ve made for you to help you out as you embark on your Summer Reading Challenge:

• My 14 favourite non-fiction books of all time: https://youtu.be/dmWVvyfu0Qs

• My top 25 book series, all in 30 seconds: https://youtube.com/shorts/htSOxZx1Gig (genres: fantasy, dystopian, science fiction)

• 5 children’s books that are so good that you’ll genuinely enjoy them as an adult: https://youtube.com/shorts/lWfI1cyERD0

• If you like Pride and Prejudice, I think you might enjoy this book: https://youtube.com/shorts/dRO1cL4PL78

• A recent discovery of a phenomenal fantasy book: https://youtu.be/jnrvrfX2FO4

• Review of an incredible sci-fi story, as well as my “Story Time” on my science background: https://youtu.be/WGKsbx8u0OU

Links to my re-edited and significantly shortened YouTube video explaining why I’m fundraising and what for:

• explaining the situation with my neck, how to fix it, and what I go through every day: https://youtu.be/4XbNiqMCMns

You can follow me on TikTok, Instagram or YouTube for more book reviews and bookish content for extra ideas for your Summer Reading Challenge, at these links:

TikTok:
https://www.tiktok.com/@jennyrowbory

Instagram:
https://www.instagram.com/jennyrowbory

YouTube:
https://youtube.com/@jenny.rowbory

Summer Reading Challenge Sponsor Form:

 
My fundraising page: https://gofundme.com/savejenny

<p>The post Summer Reading Challenge first appeared on Jenny Rowbory.</p>

We are overflowing with gratitude and overwhelmed by the kindness and generosity that has been shown. Thank you to each and every one of you. We smashed the £5000 that the donor was matching in donations! Since we raised it within the 48hours of 29th-30th April for matching donations, the donor added an extra £1000 on top of that, as had been promised. This means that from the 28th-30th April, together we raised £23,625, which includes the matched donations, which is absolutely incredible. We are blown away.

We have moved from 39% of the overall target raised for the fundraiser, to 42% of the overall target raised. Given the large amount that we have to raise overall, this is a phenomenal swing towards the ultimate goal. Thank you so much to everyone. It’s incredibly encouraging.

If anybody has any contacts with any individual or any business/company that could help further with reaching the overall target amount or would like to help with something similar in the future with matched donations, or even with matching the total amount that we’ve raised in these last five years, please get in touch here: https://www.jkrowbory.co.uk/contact/

Thank you so much to everyone.

Fundraising page: GoFundMe.com/savejenny

<p>The post Thank you – we smashed it over the 48 hours! first appeared on Jenny Rowbory.</p>

The 30th April was my late husband Ian’s birthday, Jenny’s dad. He always told Jenny that we would raise the money to get her the neurosurgery, however long it took. It is fitting then that the matching of donations will be happening across both Jenny and Ian’s birthdays on 29th and 30th April. This is the time to donate, since your donation will be matched! It would be wonderful if as many people as possible could share Jenny’s story and could tell people about donations being matched on these two days (up to the amount of £5000). Of course, you are free to donate more than that though because the target amount of money that we need to raise is so large. Fundraising page: https://gofundme.com/savejenny

At the end of March, the blood vessels in Jenny’s neck became even more compressed because of the instability of the metal and vertebrae, meaning that a lot less blood is reaching the muscles in her larynx and pharynx. She has lost the ability to control her swallowing and she chokes/aspirates even on water. She is now on puréed food but that is very difficult for her too. Eating is now an ordeal. The exertion of swallowing causes the muscles to seize up and block the airway. She cannot have a feeding tube due to medical reasons caused by the disastrous failed surgery in January 2020.

Due to the failure of the muscles in her larynx and pharynx, those muscles often seize up and block the airway. This means that Jenny is struggling even more to breathe than she was before.

We need to get Jenny the neurosurgery. The situation is even more desperate. There is nothing more that doctors in the U.K. can do for Jenny. She just needs to get to New York where the specialist equipment is and the specialist neurosurgeon.

Since the end of March, Jenny is now unable to speak at all because the speaking muscles seize up upon use due to lack of blood supply, closing up the airway, making her unable to breathe. She can’t speak if she wants to stay alive. Before the end of March, for the last couple of years, Jenny was able to speak in short bursts once every few days. Now even this has been taken away from her. She is devastated. It also means she won’t be able to use her voice on videos to fundraise for the surgery, taking away her ability to fundraise, unless she uses an electronic voice, which isn’t as effective.

Jenny’s youngest nephew once asked, “will Auntie Jenny be better by the time she’s 40?”. Let’s get Jenny the surgery she needs, as she enters the last year of her thirties. She has lost enough time. Let’s not fail her!

At the time of writing this update, we are 39% towards the fundraising target amount. If you, or a business/company that you know, are able to help further, please get in touch here: books@jkrowbory.co.uk

This video explains what is wrong with Jenny’s neck, the surgery that she needs, and the way in which she has to live every day in order to stay alive. This video answers any questions that you may have and it is also a useful link to share online with people to explain Jenny’s situation: https://youtu.be/j09KuknjrXY

Five years ago, after a disastrous UK operation, Jenny was figuratively placed to hang off the edge of a cliff by her fingertips, and there went I also, as her mum and carer, flinging my arms over the edge to catch her arms in mine before her fingertips slipped off, holding her there to keep her alive until help came. Today, we are still holding on, albeit 39% of the way towards pulling her up from where she dangles off the cliff. We just need some extra hands to come and help pull her up the full way. Whether stranger, friend or family, we are extremely grateful to all those generous souls who have given us support to date ❤️. Thank you for your prayers, thoughts and well wishes.

<p>The post Donations are going to be matched on 29th+30th April! Plus a message from Ann Rowbory first appeared on Jenny Rowbory.</p>

I would love it if you were to share the YouTube link to the poem (https://youtu.be/X_Ce50LxkBE) on social media and/or send it privately to your friends via messaging apps. I hope that the poem will bring you light, as well as raising a bit of money for my surgery.

I give permission for the poem to be read aloud at any gathering or church service this Easter or during the run-up to Easter, as long as you remember to say that the poem is ‘by Jenny Rowbory’. A text version of the poem can be found in the photo below (click on it to zoom in), if you would like to read it aloud at a gathering:

If the church or gathering space has multimedia capabilities, then the poem could just be shown via the YouTube video.

Now, for the good fundraising news! I’m always grateful for any donation, no matter how big or small, towards the neurosurgery. I think that it’s always good to share with you all when a large donation has been made because it brings great encouragement to everyone. A donor, who would like to remain anonymous, has given £5000! Thank you to that donor and to every single person who has donated or shared my story and shared links. Thank you so much for your continuing support. Happy Easter for next Sunday! I hope that you enjoy the poem. Let me know your thoughts about the poem in the comments below!

*********

Fundraising page: gofundme.com/savejenny

If you need a reminder on any details of what is wrong with my neck, the surgery that I need, and why it is getting more urgent that I get this neurosurgery as soon as possible, you can watch this video on YouTube:

<p>The post A surprise poem and some good news first appeared on Jenny Rowbory.</p>