A three-stone woman who is starving to death because of a rare stomach condition has raised almost £100,000 to get potentially life-saving surgery.
Nicolette Baker started complaining about stomach pain after eating when she was just four years old, and began to skip meals.
Doctors wrongly diagnosed her with anorexia, leading to 25 years of ‘traumatic’ treatments including meal being sectioned and force-feeding.
But in 2015 the now 36-year-old was told she actually had a condition called Superior Mesenteric Arterial syndromes (SMAS).
It is extremely rare — affecting up to three in every 1,000 people — and leads to pain shortly after eating because the start of the small intestine is compressed between two arteries.
The NHS has ruled out surgery for Ms Baker because she is already so under-weight, and placed her on palliative care.
But the woman from Truro, Cornwall, says a clinic in Germany has agreed to carry out the procedure despite her condition if she can raise £50,000 to cover the costs.
Since setting up a GoFundMe page at the start of the year, she has received more than £95,000 in donations. But in an update today Ms Baker said she was too sick to tell donors whether she had managed to secure the treatment.
She wrote: ‘I am so deeply sorry for days of absence… feeling ever so weak and the fight is hard. I’d like to share with you where I am when I have not the energy to articulate it.’
Nicolette Baker, 36, now weighs just three stone due to a condition that gives her pain shortly after she consumes food
From Truro, Cornwall, Ms Baker (pictured with her whippet Eden) has been misdiagnosed since an early age with anorexia
But doctors have now diagnosed her with Superior Mesenteric Arterial syndromes (SMAS), a very rare condition. The NHS recently placed her on palliative care
Ms Baker had set a target of raising £80,000 so that she could get surgery for her condition in Germany. She has now raised £95,000, but says she is too ill to update donors on her treatment
Ms Baker said: ‘I am trying to keep the dream alive. The result of the surgery is not guaranteed but this is my last chance to reclaim my quality of life.’
She wrote on the page: ‘This surgery costs well over £50,000 and does not include my accommodation, my flights, travel and medical insurance, Covid tests and a medical chaperone accompanying me to surgery.
‘I will need to spend six weeks in Germany and due to my severely emaciated state of health I will need to take taxis and rely on extra support for luggage and transportation.
What is Wilkie’s Syndrome?
Superior mesenteric artery (SMA) syndrome, also known as Wilkie’s syndrome, is an uncommon but well recognized health problem.
It is characterized by compression of the small intestine between the aorta and the superior mesenteric artery.
This results in chronic, intermittent, or sudden obstruction of the small intestine.
Despite the fact that about 400 cases are described in the English language literature, many have doubted the existence of superior mesenteric artery syndrome as a real entity.
Some investigators have suggested that superior mesenteric artery syndrome is overdiagnosed because it is confused with other causes of elongation of the small intestine.
Nonetheless, it is a well-known complication of scoliosis surgery, anorexia, and trauma.
It often poses a diagnostic dilemma.
‘But from the bottom of my heart I want to thank you for reading this. Anything you can donate to this cause would be so gratefully received.’
After the local community helped her smash the target, she issued a heartfelt thank you to all those who have give her hope.
She added: ‘I don’t know if I’ll make it until the surgery date but I’m living for each day and the hope that I can get better is giving me something to look forward to.’
‘I am absolutely indebted to you, every one of you. Everyone who has donated in any way – monetarily, by sharing, by trusting or by connecting. I thank you all.
‘So many of you are keen for me to keep you informed on my journey, by which I’m most humbled and it is the very least I can do.
‘I will be turning off donations in due course, with my eternal gratitude for every one of them, and will keep you posted on my rainbow coloured journey of which you are all such a magical part.’
Nicolette said she was finally diagnosed with SMAS in 2015, which refers to vascular compression in the small intestine, after experiencing pain when eating and drinking from the age of four.
The anticipated pain can cause sufferers to develop a fear of eating and around one-third of people with the syndrome die from malnutrition.
Nicolette said she was treated as a mental health patient for 25 years and told she had an eating disorder. But the syndrome is so rare with an incidence rate of just 0.013 per cent that it is not well known among UK medical professionals.
And she said although she felt ‘completely humiliated’ during the decades she held no ill-feeling towards NHS staff who were trying to help her.
The German clinic specialises in severe vascular compressions and agreed to perform the surgery this month if she could find the cost, Ms Baker said
Ms Baker said she had been treated as an anorexic patient for 25 years, before finally being diagnosed with the condition in 2015
She added: ‘I am still deeply grateful for all the NHS treatment I received throughout the decades of my dismissed symptoms and it is merely due to its rarity that the medics gave me the diagnosis they thought fitted with my presenting symptoms.
‘I truly believe that they did what they believed was right and I have only respect and gratitude for that despite it leading me to where I am now.
‘I do believe they were motivated wholeheartedly to do the best for me and I have no regrets for my past medical experiences and traumas.
‘I didn’t have anorexia because I wanted to be thin. I simply didn’t want to eat because of the pain it caused me.’
A friend and advocate of Nicolette, who helped set up the fund raiser, said: ‘When we go to the doctors, we assume that they will know what to do. It’s uncharted territory when they don’t.
‘I think if medics can’t find something wrong, they can sometimes be quick to label someone or say it’s psychosomatic but that can be very damaging to the patient. It can really knock their confidence.
‘Nicolette is very exhausted but she is tenacious, determined and strong. It’s outstanding considering her circumstances.
‘This really is her last chance.’