Sixteen-year-old Ciara Micks hopes to raise more than €40,000 for a surgery in Barcelona that could save her life.
Ciara was diagnosed with Ehlers Danlos Syndrome (EDS) in 2015, but since being diagnosed her condition has deteriorated dramatically. Due to a lack of expertise in Ireland, Ciara and her mother Anne were forced to travel to London, as are most EDS patients.
EDS is a condition affecting the connective tissues in the body, which provide support in the skin, tendons, ligaments, blood vessels, internal organs, and bones.
When Ciara found out she had to travel to Barcelona for the surgery she said, “I just thought it was ridiculous. There is no reason apart from the lack of knowledge why we need to go there. It’s a choice to learn about it, and with so many people with EDS in Ireland it isn’t comprehensible that people who can help don’t have an interest in it.”
As there is no treatment available to EDS patients in Ireland, many people like Ciara are forced to travel to the UK for checkups, as well as specialist advice and treatment. Raising funds for a life-saving surgical procedure, Ciara hopes to make the trip to Barcelona, Spain which is the only European city to carry our the cervical fusion surgery Ciara needs. This operation would need to happen this March 2018 so she needs to raise the funds before then.
“In Ireland, they can do cervical fusion procedures, but not on an EDS patient, never mind somebody with as many complications as I have – blood pressure problems, heart problems, and my blood does not clot. You have to take into consideration the EDS and being resistant to the anesthesia, so they have to do a lot to make it work.”
After the surgery, aged just 16, Ciara will never be able to move her neck again, or move her head up, down, left or right. Ciara said, “When I found out about the surgery I thought I’d be more scared than I was. But I sort of knew that it was coming, it’s hard to explain it, but it was happening in my own body, so I felt it was coming. My mum broke down, and I just said, okay let’s do this. I was ready to make a change for the better.”
The surgery. overall will cost over €100,000. Time is of the essence for Ciara now as the next available procedure is in March, leaving her with just over one month to raise more than €40,000.
“We have a lot of people helping so far, so it’s very enlightening to see so many people actually care and try to help. There are people in Glasgow and Lanzarote helping us raise funds,” said Ciara, with her mum adding, “We are very fortunate.”
If Ciara misses the surgery in March, Anne says, “Ciara can’t be in Spain when we go into the hot weather when she is recuperating as one her comorbidities is she can’t cope with extreme heat, she passes out.”
If the surgery is moved back to November, Anne says, “that takes away another year of her life. And she has had enough years gone already.” “If anybody would like to help raise funds by doing their own event in Ciara’s honour, please get in contact as we would be very grateful,” Anne concluded.
If you would like to donate to Ciara’s EDS surgery fund, you can visit
www.gofundme.com/ciaraeds or contact Anne at [email protected]
See their Facebook page CiarasFight for more info.
More local news here.