I sat in disbelief, faced with the daunting prospect of fundraising, I could not fathom what was happening both with my body and the fact the surgery was not undertaken in the UK. We had at the least £55k to raise to make this possible, whilst my condition continued to decline. The mountain that I was already trying to clamber, suddenly became much steeper.
On the evening of 27thOctober 2016 myself and Nick opened the crowd funding page. Sat at home we thought of the name ‘Ali’s fight for fusion’, we worked together on writing the information for the page. We initially found this quite a challenge, there was such a long history regarding my health and what brought us to having to fundraise that condensing it seemed impossible. Emotions were high as we went through everything, many hours later we had finished. We read it repeatedly, it was imperative the seriousness of the situation came across along with a brief history of what brought us to this point. I had such a sense of unease, very weepy knowing in the next few minutes this page would go live and be out in the public domain. On the whole I am quite a private person, this wasn’t just going out to my friends list on social media this was a public page, open to all. I suddenly felt very vulnerable, unsure of how the page would be received, worried what people would think of me and the true extent of my health issues out there forever. At the same I was determined to fight for my life, a better life and to raise as much awareness as possible of these rare conditions.
Enter…the page went live. I remember walking to the kitchen with my cup of tea, sitting at the table staring into space. It felt surreal, never did I imagine I would be in this situation. This is something you read about and donate too, not something that happens to you. All the charity runs I had participated in over the years, raising money for causes close to my heart and now the tables were turned. Nick called me into the room, gave me a cuddle and told me to look as he turned the computer screen towards me. Within minutes the page had been shared countless times, donations and messages of support came flooding in. Tears rolled down my face as I began to read the heartfelt words from people.
So many people came forward with the most amazing fundraising ideas, messages of support and continually shared the page on social media thus spreading the word further afield. I was taken aback by the response from friends, old school friends, past work colleagues to people I had never even crossed paths with in my life.
Within the week media were contacting Nick asking if they could cover the story. I didn’t like the thought of being in the paper but knew it was essential to spread the word and raise awareness. Nick had to give me many’ little talks’ of encouragement along the way, amazing chappy. Nick spoke with a journalist from our local newspaper which was the first article to go to print followed by journalists from other papers. Within a matter of 10 days the story had made 3 local newspapers and national news online. It felt very strange seeing my face in the newspaper and reading each article, again like I was reading about someone else. No matter how hard I tried I just could not get it to sink in.
The week we returned home from the consultation in Barcelona a reporter and cameraman from Granada came to the house to interview myself and Nick. I was exhausted from the trip; my symptoms were out of control. I had to dig deep as to get some coverage on regional news could really help the fundraising and awareness. I was grateful for the opportunity. Both the reporter and cameraman were lovely, they instantly made me feel more at ease by saying they were just going to informally chat with us about the condition and fundraising. The cameraman had set up, I remember him struggling with the glare coming off my glasses, he had asked if I could take them off for the interview “I can but I’ll be talking to the wall, I can’t even see the reporter sitting right next me” I said, we all had a giggle and decided the specs were to stay firmly on!! We chatted for well over two hours as the reporter made notes and asked questions, sometimes he asked the question a few times as I was nervous and my voice a bit wobbly. I went through everything that had led us up to having to fundraise, knowing full well 95% of the content would not be included as this was going to be a very short segment. Throughout the time, I thought the reporter was gathering information and getting me used to talking with less nerves however to my amazement when I thought the ‘practice’ was over and we would do the interview I was told we were finished. They explained they will cut/edit and piece an item together when back at the studio in the hope it would be aired that evening. Sure enough it was aired that night and cut short due to the football, absolutely fine by me I thought as I could not bring myself to watch it. I sat with Nick on the sofa whilst he watched it and I covered my eyes, not many people like to see themselves on TV. Within minutes the segment had been shared on social media by many people, still having not watched it I found myself in tears again. It felt very surreal, I took myself off for a little cry and had ‘words’ with myself. I told myself to toughen up a bit that the story was out and people were helping and wanting to help, this was positive. On reflection, I think my issues were more with the fact I am such a proud person and having spent years hiding so many symptoms that suddenly I was in the public domain with an unmissable neck brace on, looking quite thin and the true extent of my health issues finally out there, it made me feel quite exposed and now I couldn’t run away from what was happening.
Over the weeks and months countless people came forward organising fabulous events. Never did we envisage the level of support that we received. Friends, family and people I had never even met generously gave their time, effort and love to host various successful fundraisers. Everyone was mucking in and helping in any way they could. It was very emotional for us to see first-hand the lengths people were going too to help and I can assure you many a tear was shed over the fundraising period, I was so overwhelmed and taken a back. Although I could not attend the majority of events due to my health I took great joy looking at the pictures when they came in of people having fun, giggling, munching on cake, having a drink and a good chat, zombie walks, teachers being pied by students, people cycling, swimming, playing football, walking in gale force winds on Blackpool front, auctions, collecting in the community, beard shaves…the list is endless. More than anything, I loved the fact it was bringing people together.
I will never forget the day I was on route to the hospital, stopping for some water at the shop when a dear lady came over to me and placed £20 in my hand saying she had seen the story on the news but didn’t know how to donate online. I told her I could not accept the money but thanked her so much. The £20 note was passed between us for a few minutes to the point we both started laughing and the shop assistant said he would settle it by taking it himself. I gratefully took the kind donation and gave the lady a big hug thanking her from the bottom of my heart for being so kind and thoughtful. We had a little chat together before I had to make my way to the hospital.
Over the month’s cards would arrive through the post, sent from my local newspaper office where people had gone in with a donation as they did not have access to a computer. I was so touched that people had taken those lengths of making their way over to the office and handing in what were the loveliest cards with very moving words inside.
Donations continued to come in and I made sure I looked at each and every name and in my head gave a little thank you each time. So many names were unfamiliar, donations from total strangers that had read the story and taken the time to donate. It meant so very much.
In November, a shock anonymous donation of £10k came in, we could not believe our eyes. Initially we thought they must have entered too many zeros on entering the amount and were awaiting contact from the crowd funding site we had used to tell us it had been a mistake, no such call occurred. We sat in astonishment, again tears from many, this gave the fundraising such a boost. Around this time we thought we could actually make this target, we could do this. The newspapers took the anonymous donation story on and again it was shared around social media keeping up the momentum.
My family, Nicks family and friends went out into the community handing out collection boxes, posters and events posters. So many local businesses kindly agreed to have them in their shop, the staff were lovely often asking how I was doing and what else they could do to help. This was amazing, not only increasing donations but also raising much needed awareness.
Awareness….one of my main aims. As the fundraising went on I found myself receiving more and more messages on social media from either people with EDS wanting to connect and chat which was fantastic to quite a few parents contacting me with concerns about their children’s EDS or suspected EDS. I would respond with advice to the best of my knowledge and sign post them to EDS savvy consultants around the country to try and save them some time on the merry go round. More and more people were talking about EDS and sharing articles on social media. This meant an awful lot to me as EDS can be a very invisible condition, yet extremely wide spread and cruel, the fact people were coming across articles and recognising those three letters meant awareness was actively taking place.
Having to fundraise is such a daunting prospect, you worry you won’t make the target, you worry what people will think of you, you feel exposed and vulnerable, stressed you can’t help more and get involved, sometimes even feeling guilty. However, as time went on it became apparent that nothing but positivity came from our fundraising experience. As I got used to the fact my health conditions were now out for all to see and read about, I realised I have nothing to be ashamed of, I have not asked for these cards to be dealt and I’m trying to play them to the best of my ability. A weight felt lifted from my shoulders, all those years of hiding symptoms and pretending to be normal it was a fulltime job in itself, that could now stop. The real driving force behind the change in my thinking came from the way people came forward with heartfelt messages of love, fundraising ideas and donations. I don’t think I will ever be able to articulate just what that has and does mean to me. It has been the driving force in keeping me looking and moving forward, never underestimate the power of human kindness because for me it has been a magical medicine on those days I feel I can’t do another minute with the pain.
As I write this post we have reached £65k and far exceeded our initial target. We are so grateful for this as a few months back we were told our crowd funding site take 8% from each donation and with insurance to purchase and after care the extra money raised will go towards that.
We have been very fortunate along the fundraising journey that an abundance of people came forward to donate, fundraise and offer there unconditional love and support, it is something we will never forget. I am quite a sentimental girl at heart and have started to make a scrapbook documenting the fundraising journey to be able to look back on all the amazing people who supported us.
Nick has put together a short montage of some of the fundraising events that took place over the 6 months, we hope you enjoy watching as much as us. A lovely reminder of the generosity of many.