A Northumberland woman with a rare condition has left hospital following major surgery which she hopes will save her life.
Melanie Hartshorn suffers from Ehlers-Danlos Syndrome (EDS), which causes her skull to dislocate from her neck and spine. As a result, the 33-year-old, from Cramlington, has spent the majority of her life lying down.
Less than two weeks ago, she underwent the second part of a risky operation to fuse her neck to her spine. The surgery, which is not available on the NHS, was carried out in Barcelona, Spain.
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Melanie has now left hospital and has returned to her apartment where she is recovering. She is hoping to be able to fly home in a few weeks.
She told Chronicle Live: "I'm just so grateful to everyone who helped me to get here and to the team for agreeing to operate and take the risk. They’re all so happy and congratulated me when I woke up. (They said) 'you survived, you’re alive, we’re so happy, congratulations'.
"I'm just so excited to be able to do things again but I'm exhausted too. I was told yesterday that I need to slow down, rest lots and listen to my body.
"Home is dependent on when I’m fit to fly. My PA is here and we are hoping to fly home together in a few weeks."
Melanie previously had her neck and spine fused during a major operation in Barcelona in 2017. However four broken titanium screws in her vertebrae have caused the fusions to become dangerously unstable.
She was suffering from seizures, vomiting and pain and was kept alive for 18 months by a surgical halo vest.
Melanie said the halo, which was keeping the fusions in place, was only a short-term fix and she needed to raise £100,000 for the operation to fuse her neck to her spine.
More than £84,000 was donated to her Go Fund Me page and a "very kind person" offered her a loan as a last resort to ensure the surgery went ahead.
In October last year, she travelled to Barcelona for the operation, which had to be carried out through her throat. However only the first part of the surgery was completed as her body wasn't strong enough.
Melanie was placed into an induced coma on the intensive care unit (ICU) where she recovered for four-and-a-half weeks. She then returned to her apartment, where she has spent the last few months recovering.
She went on to experience a number of set backs including allergic reactions to her tube feed and a tear in her oesophagus. Scans also showed broken screws in her thoracic spine, which needed to be removed.
Last month, Melanie's mum Molly Hartshorn was diagnosed with heart failure after falling ill. The 71-year-old has received treatment while supporting her daughter in the Spanish city.
Melanie said: "My mum had an anaesthetic here last week too and had her heart shocked to reset it into the correct rhythm again while I was I hospital. It was a success so that’s another big positive.
"Obviously she has to try not to get stressed or overdo it as it could happen again, but we are hoping she will be much better now her hearts beating to the correct rhythm again!"
Melanie said she was deteriorating rapidly before the second surgery, which took place on Friday, February 10. She said the operation took 10 hours to complete and she has been left feeling "totally exhausted".
Melanie now needs to rest and recover before starting to push herself to sit up. She said the side effects which she is experiencing are minor when the surgery was to save her life.
She said: "It was long and I spent the weekend in ICU afterwards. I was unable to swallow so I needed a feeding tube for medications and a central line for everything else.
"I was in a lot of severe pain and needing constant doses of medications and infusions to attempt to control it. But I was very lucky that they managed to access my spine without splitting my sternum bones.
"They accessed it from the front and, due to me being so hypermobile, they managed to make the incision smaller than expected too. They had to pull my trachea and oesophagus to the side to get behind it to reach my spine, which is why I’m struggling with swallowing and talking again.
"At the moment I’m managing to eat and use thickener for fluids otherwise I choke, and my speaking isn’t great, but it should all improve as the inflammation settles and the nerves recover."
Melanie's fundraising total has had to be increased to £165,000 to cover the cost of extra medical care. She has so far received £118,030 in donations.
The money raised will be used to pay for Melanie's second surgery, the cost of her extended stay in ICU and additional treatment. It will also cover the cost of accommodation and pay back loans.
A fundraising ball has been planned for April 1 at the Grand Hotel in Gosforth, Newcastle, to raise money for treatment.
It includes a red carpet welcome reception with prosecco, a three course meal followed by coffee. There will also be entertainment from comedian Cristian Steel and live music by band Liberty Belle.
In addition, there will be a grand raffle and an auction with prizes which include stays at lodges with a hot tub, glamping, photoshoots and hampers of alcohol. Tickets are £45pp and everyone is welcome.
Melanie added: "I'm really looking forward to the ball to help raise some funds to pay off the debt but, more so, to have a brilliant night celebrating, get dressed up, have a laugh and a dance and some fun!
"I've been stuck in a halo in bed unable to do anything for so long, even wear nice clothes. It's going to be extra special for me, and a wonderful opportunity to spend some time with, and thank everyone, who's supported me!"
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