‘Steptember’ is our new fundraising push during the month of September. Hopefully it will be a STEP towards reaching the target amount needed for Jenny’s life-saving neurosurgeries. What is ‘Steptember’? During September, take a photo of steps and post the photo online, along with this brief message (you can use your own words or you can copy and paste the following to put with your photo):
I am taking part in ‘Steptember’. In September, I am posting a photo of steps. This is to represent ascending steps towards the fundraising target to get Jenny Rowbory life-saving neurosurgeries that aren’t available in the U.K. for complex EDS patients like her. Please consider donating towards that goal here https://gofundme.com/savejenny You can watch a video about the situation with Jenny’s 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
I invite everyone to join in with Steptember. Post your own photo or video of steps along with a message explaining why and what you’re raising money for.
(NB – please remember to be safe with the photo that you share online, ensuring that nobody would be able to identify where you live from the photo. For example, do not post steps outside your front door)
Thank you! We are so grateful for your continuing support. A large donation in August inspired others online to help. On Instagram, a very kind person called @nooks_hooks in Belgium rallied the crochet community with a very generous giveaway on Jenny’s behalf, and donations came flooding in. Thank you to her and to everyone who has donated. It is much appreciated. Every donation brings so much hope and brings us a STEP closer to the target. It would be wonderful if you could participate in ‘Steptember’, especially as things are getting increasingly tough for Jenny the longer that she goes without the surgery. Invite your friends to do it too! Thanks again.
Jenny often gets messages and questions across various social media and she apologises that often she is too ill to respond to any questions. She tends to receive the same questions over and over again; she has made several videos answering those questions and has often pushed herself too hard to reply in comments to those questions, even when it’s repetitive. But people still ask the same questions because they do not realise that Jenny has answered them already, many times over. We realise that these questions are very well intentioned and are just trying to help, or are curious, but please remember that Jenny is extremely ill. She is only physically able to speak for a few minutes once every few days. She uses those minutes to batch record videos for social media. Jenny has been pushing herself far too hard to fundraise by posting a lot of videos on social media (mainly Instagram, TikTok and YouTube). After expending such a huge amount of strength, more than she should be doing (because she is so desperate for the surgery), she has nothing left to answer messages. It is hard for her to pick up her phone at all. She also has no time. As she deteriorates, her days have extended to 74-hour long days, just in order to medically do all the things that she needs to do to keep her body functioning. She lives permanently within an emergency medical situation, and just surviving each day takes everything that she has. I know that it’s hard to comprehend how severely ill she is, so when she’s not able to reply, please know that she’s not being rude. She’s doing more than she should already. She already has to put herself out there on social media more than she would like, because obviously she needs visibility in order to raise the money to save her life. I know that many people are curious about her life, but it is good and right that she sets boundaries now. So from now on, she will be leaving questions unanswered if she has answered the question many times before, or if she doesn’t feel comfortable sharing that information. She has shared more than enough and it is very tough on her. Thank you for your understanding and compassion.
Thank you so much for your continued support and generosity. Times are very hard financially for everyone; even if you are unable to donate, participating in ‘Steptember’ and sharing Jenny’s story online helps a lot too. Although Jenny has been on the local BBC News, we are continuing to look for a responsible and ethical journalist who could take her story to the national level.
Thank you so much.