A MARSTON Green woman who has been left unable to walk is fundraising to have potentially life-changing surgery in Spain.
Charlie Fitzharris’s life was turned upside down last February when she was diagnosed with Hypermobile Ehlers-Danlos Syndrome (EDS), which affects the connective tissue that supports her skin, organs and ligaments.
She has been told by experts her spine is so fragile it is being crushed under the weight of her skull compressing nerves, veins and spinal cord.
She said the condition has left her neck so unstable it’s too dangerous for her to complete physiotherapy.
After joining EDS communities online she learned about a spinal fusion operation, where parts of the spine are welded, which is suggested to help.
However, it is not offered on the NHS for patients with EDS and Charlie is fundraising to have this surgery in Barcelona.
She said: “I found it very hard to believe that the operation wasn’t available in the UK.
“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.”
The 27-year-old wanted to raise £60,000 to cover the cost of the surgery, flights and other expenses.
Since January Charlie, with help from her husband Oscar Mealia, their friends, family and strangers have raised a whopping £68,173.
She said any extra funds raised will be used for recovery costs.
Any addditional funds after that will be donated to help other EDS sufferers in a similar situation in the UK, or to start up a charity to supporting EDS patients.
She has booked her first operation which will be performed by Dr Gilete at Teknon Hospital, in Barcelona, on May 9.
There have also been discussions around a possible second surgery for Charlie.
She said: “We now have enough for the first surgery and if I need the second, we have already made a dent in that which 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.
“It has put me in a really great place to take on the surgery and hopefully recover really well.”
The next fundraising event is a music concert at Lyndon Methodist Church on Melton Avenue on April 27 with music from Jacob John, Caitlin Rose and Darcy Homes and dances.
For more on the concert visit www.eventbrite.co.uk and search Chance 4 Charlie concert.
To donate or more on Charlie visit https://www.chance4charlie.com/chance-4-charlie
