A Cramlington woman who is completely bed-bound because of her condition is set to undergo specialist surgery in Spain later this month.
And Melanie Hartshorn is appealing for further support to meet the costs of the essential surgery, which has been booked a few months earlier than planned as her situation is now even more critical.
She suffers from a severe form of Ehlers-Danlos syndrome (EDS) that causes all of her joints to dislocate, especially those in her spine and neck. She also has a severe case of craniocervical instability (CCI).
The 27-year-old initially believed that the complex surgery she needed was only available in the USA and she started an appeal for the £150,000 that was required.
However, she recently got in touch with a renowned neurosurgeon in Barcelona after discovering a section of his website dedicated to EDS and CCI and he has agreed to take on her case for £80,000.
Melanie has now raised more than £50,000. The operation is due to take place on May 21.
She said: “We needed to bring forward the surgery to this month due to rapid deterioration and the potential of irreversible damage being done.
“I’m flying, probably via medical flight or a stretcher on a commercial plane, to Barcelona and I will be in hospital five days before the operation for the halo fitting and tests.
“The plan after the surgery is to spend two days in the ICU and another two weeks at the hospital for post-op work, then being discharged to a local accessible hotel for two weeks to recover and have outpatient follow-up scans and appointments before flying home.
“All the pre-op testing required before going to Barcelona has been done and now we’re putting out a fresh appeal for support and funds as there is still just under £30,000 to be raised.”
Among other issues, Melanie has to deal with her skull slipping out, even in the neckbrace. This affects her heart rate and rhythm.
A number of fund-raising events for Melanie have taken place and are being planned, including an iKandies Cabaret Show for adults by Infusion Parties and Events at New Delaval and Newsham Workmen’s Social Club on Saturday from 7pm.
It includes a singing and dancing show, with a bit of acting, featuring well-known songs from musicals and older chart hits. A disco will be held afterwards and there will also be a raffle.
Infusion Parties and Events founder Caitlin Tolson explained that there was a vote on its Facebook page for the cabaret fund-raiser and Melanie’s Mission to Live was the good cause that won.
A team of 10 will all be giving up their time to do the event free of charge.
Tickets are £3 and you can book them by texting 07770 910613 or message Infusion on its Facebook page. It is free to reserve and the fee is payable on the door on the night.
To make a donation, visit www.gofundme.com/Melanie-s-Mission