Her family are trying to raise the money so she can get treatment in Germany
An artist from Ely is currently trying to raise £250,000 for multiple life-saving operations after her condition deteriorated while undergoing medical assessments in Germany for a rare chronic illness. Emma Taylor, 31, lives with hypermobile Ehlers-Danlos Syndrome (hEDS), a rare and complex connective tissue disorder that affects multiple systems in the body.
Emma had been struggling to get diagnosed in the UK after her situation had been “deteriorating”. Bridget Taylor, Emma’s mum, said: “We were really drawing blanks in the UK and there didn’t seem to be much more help for us, which sadly seems to be the situation with hEDS patients. We couldn’t get scans in the UK because at the time, she’d had a couple of seizures. They couldn’t help her in case she had another seizure, so we were in this crazy catch-22 situation.”
Mrs Taylor found there was a place in Germany that could get the scans to determine how to help Emma. When she was in a good position to travel, they went to Germany on February 23 before Emma’s situation rapidly declined.
Mrs Taylor continued: “On arrival, she was fine. The next day, she was having multiple seizures. They managed to stabilise her condition enough to do the scans and found out she has multiple vascular compressions, which basically compromise the blood flow within the body and then the actual organ function.”
Due to her condition, Emma’s joints and limbs often pop in and out and she can no longer hold up her head on her own. Emma also struggles with walking, tyres easily, and can’t eat very much.
Mrs Taylor has described the experience as “quite overwhelming”. She said: “I think anyone will understand this if they are a mother. If your daughter’s life is threatened or compromised to this extent, you will do anything to try and save them and make life better.
“At the moment, I’m not really processing it. I don’t think it’s something I’ll be able to process until I get home. Currently, it’s a matter of staying strong for Emma and getting her through the surgeries because we are stranded here and can’t get her home in the situation she’s in now.”
Emma is now waiting to have “numerous operations” to help stabilise her situation with her family trying to raise the money to afford the pioneering treatments. Mrs Taylor said the donations they have already received have been “so uplifting”.
She continued: “I can’t believe people are getting behind us. It’s amazing and it’s keeping us going, particularly Emma. When you see names popping up like people from school, workplaces, and even people we don’t know, you just can’t believe how much kindness and generosity there is out there.
“We desperately need money to raise the money. It’s potentially going to cost something like £250,000. It’s a lot of surgery and care. So we need to raise as much money as possible to help us. So we’re so indebted to people.”
Emma is an artist who makes sculptures out of books and is particularly interested in nature. She had created a book that contains images of her work in it and has opened up about her feelings and struggles with hEDS, which is available online for people to buy and will go towards the surgery costs.
There is also a series of small book sculptures she has made that can be bought through the Woolff Gallery. Mrs Taylor described her daughter as “the sweetest person” who “absolutely lives for art”.
She said: “It makes you want to cry. It is just so cruel, this horrible chronic illness, because she really is the sweetest person and she never complains. She loves making. Art is everything to her and that’s one of the challenges at the moment. She’s struggling to carry on with her work because of the instability in her shoulders.”
Emma is set to start surgery next week and it will be carried out “bit by bit” according to the money the family is able to raise. They are hoping the surgeries will give Emma the “opportunity to have some kind of life”.
Mrs Taylor added: “Emma’s never going to be perfect in her health. No one is when they’ve got such a severe case of hEDS. But it means that she’ll be able to carry on doing art, which is what she lives for. She’ll be able to get out and about because, at the moment, she’s spending the majority of the time at home lying on her bed just as she is here. So, it’s not practical. You can’t carry on in that situation.”
You can donate to Emma’s GoFundMe page here. You can also find Emma’s work including her book on her website.