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I was interviewed for the Solihull observer:
Here is the article link:
Below is the full unpublished interview
My connection to Solihull:
My husband Oscar and I have been living with his sisters family in Marston Green for almost 2 years and my husband grew up in Solihull and his parents and sisters all live here too and are heavily involved in their local church, Renewal. Oscar was born in Solihull and has lived here most of his life aside from when he went to London for University, which is when we met.
We have been together for almost 5 years, but have been married since February. Moving in with his family in Solihull where he has such an incredible community support network has been so important whilst I have been so ill. As we have lots of family and friends around us.
I've seen the event website for later this month at Lyndon Methodist Church, could you tell me a little more about what's happening on the 27th?
Our incredibly kind and talented friend Josephine Soden, a musician, singing teacher, model and mother organised the event. She was recently interviewed on Solihull Radio about the event which will include a whole host of talented singers such as Jacob John, Caitlin Rose and Darcy Homes as well as live dance, spoken word, rapping and acting performances. My mother in law has organised a raffle which will also take place at the event with prizes donated from local businesses. The event is from 2:00 – 5:00 pm and tickets are available for only £5 for adults, £3.50 for children and £15 for a family ticket including 2 adults and 2 children at Eventbrite.co.uk under ‘Chance 4 Charlie Concert.’
When were the fundraising sites set up?
The fundraising started in January of this year. We went to meet the Neurosurgeon in Barcelona for tests and to see if surgery was an option for me and if so make a surgical plan. We had been in contact with the neurosurgeons' team since November and knew that surgery was likely. Anticipating this a few friends of mine put on a meditation fundraising event in mid-January in London before we went to Barcelona in late January, but most of the fundraising began when we got back and had confirmation that I was eligible for surgery and needed it as a matter of urgency. And learnt that I needed more extensive surgery than I had anticipated.
What other events have been ran in order to fundraise for your treatment? They don't have to be exclusively Solihull related!
A south Indian restaurant called Ganapati in Peckham, London where myself and Oscar used to work has been collecting for the fundraiser since January in both their restaurant and take away. They have placed two adverts in local south east London papers, one of which, The Peckham Peculiar donated the advertising space. Ganapati restaurant also put on an art exhibition of mine and Oscars artwork and works submitted by the community which were sold for donations and in the same evening sold delicious food and drinks with all proceeds going to our fundraising. My cousin is a tattoo artist in Gloucester, at Black Letter Tattoo's, during March they hosted a tattoo flash day with 4 tattoo artists donating their time and worked from 10 am to 10 pm, making an incredible 4 grand. My brother and his friends put on a gig in Digbeth in March at Muthers Studio who hosted the event for free with 4 local Birmingham bands; Sunshine Frisbee Lazerbeam, Mutes, Hoopla Blue and Mayors of Toronto all playing for free. One of my brothers is a music teacher in Telford and his students put on 2 gigs to raise funds. In Wantage where I grew up, there have been several dance classes, a race night and many local business and pubs collecting. There have been numerous cake sales, walks and swims taking place all over the country. There is yoga class happening on the 7th with a Birmingham Yogi called Yogi Claire at the Medicine Bakery in Birmingham city centre which was featured in OM Yoga magazine. Yogarise in London dedicated 2 weekly classes throughout the whole of March to fundraising. Another Yoga instructor called Miss Yoga Mel dedicated a couple of classes. In Torquay, Devon where my parents live there have been numerous events, including a ‘Toddle for Charlie' which was a sponsored fancy dress walk for toddlers. In Düsseldorf, Germany where my other brother lives, him and his wife collected and sold drinks at her art exhibition. There was a murder mystery event held, a dog portrait auction, there’s an Easter Egg hunt happening. We have also had art donated which we are finding a space locally to display and sell. There is a dance battle happening June. There is salon doing a prize draw for a cut and colour. And we are often hearing about workplaces holding events independent of our fundraising circle.
How does it make you feel to see so many people have donated more than what was initially set out?
It has been incredibly overwhelming, we really didn’t know how we would fundraise such a huge amount and we were told halfway through that I may need a second smaller surgery a few weeks after the first one, depending on my recovery with an extra cost. So the fact that we now have enough for the first surgery and if I need the second, we have already made a dent in that is beyond incredible. I feel extremely lucky to know so many generous, kind and proactive people. And even beyond the people we know, the kindest of strangers has been really astounding. Although it’s a frightening and difficult situation to be in, the communities that have supported us through this have made it strangely joyful. Which is put me in a really great place to take on the surgery and hopefully recover really well. And if I don’t need the second surgery or incur any other medical costs, any extra money raised I want to put into either a charity to help people in my situation or if I’m not well enough to take that on directly to others crowdfunding for similar healthcare.
When did you find out you had Hypermobile Ehlers-Danlos Syndrome?
I was diagnosed with Ehlers-Danlos Syndrome in February 2018
When did you find out about treatment in Barcelona?
I found out about the availability of treatment in Barcelona in August 2018
How did it feel to know you could get a life-saving operation in Spain?
At first, I found it very hard to believe that the operation wasn’t available in the UK. But after thorough research and joining many different patient groups I came round to the idea that we would be able to raise the funds. I was also keen to get the surgery not only for my health but as an example for the UK for how vital and life-saving these treatments are. The closer we’ve got to the surgery the greater the sense of relief, hope and optimism that I could have not only a better chance of life quality but a chance of life itself.
What does it mean to you to be able to have the operation, I see you've already booked a date?
Yes, for the 9th of May. Whilst it is a very serious and complex surgery, I feel immensely blessed and overwhelmed by people’s support, generosity and love which I don’t think I can ever thank people enough for! As my neck is so unstable it’s too dangerous for me to complete physio or go swimming and keep up a routine which is vital to managing my overall health in the best way possible. So not only is my health at risk but my health worsens each day. So getting this surgery not only fixes my neck but will allow me to strengthen and manage other aspects of my condition in the best ways possible. But all in all, despite my health, I am so incredibly optimistic for the future and my life after surgery and hope to make a difference in people’s lives through raising awareness and becoming an advocate.
How old are you?
27 years old, but I’ve been severely ill since I was 24.
If I've missed anything please do write what you want.
Ehlers-Danlos Syndrome is a collection of 13 different connective tissue disorders which can affect any part of the body and usually lead to many different symptoms which at first glance seem unconnected. Although I wasn’t diagnosed until I was an adult, I showed symptoms and signs my whole life, such as easy bruising, serve joint pain, migraines, pore proprioception, dental issues, varicose veins and bowel issues even as a very young child. Although EDS is incurable, if identified early it can be treated appropriately, depending on the severity of each case. Also, if identified early there is a possibility of avoiding severe disability and life-threatening complications as an adult. It is believed by many to be the most neglected illness in modern medicine as it was referred to by one specialist and is often re-quoted by many in the EDS medical community. The charity EDS UK recently partnered with The Royal College of General Practitioners, to create an EDS toolkit to tackle the barriers to diagnosis. (https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/ehlers-danlos-syndromes-toolkit.aspx) One of the motto's of the toolkit is, ‘if you can’t connect the issue, think connective tissue’. As having many seemingly unconnected symptoms can cause many people to be labelled as hypochondriacs, creating a barrier to diagnosis.
My surgeon is called Dr Gilete, the hospital is called the Teknon Hospital, one of the most advanced hospitals in the world and certainly in Europe. I feel incredibly lucky to be under the care of such a world-renowned surgical team.
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