A bride-to-be who was forced to postpone her nuptials because of a debilitating illness now hopes that life changing treatment will mean she can finally get married.
After 10 years of debilitating symptoms ranging from dizziness and vertigo to passing out and unsuccessful treatment for fluid on the brain, Kaiva Locmele decided to look to the USA for answers.
The 30-year-old 30 cancelled her June 2020 wedding to truck driver fiancé, Arthur Picacelma, 35, because she was so ill and the condition made her feel like she was ‘drowning’.
Kaiva was given a diagnosis of craniocervical instability – which involves excessive movement between the skull and the two top vertebrae, and can injure the spinal cord, brain stem, vertebral artery or vagus nerve – by the Caring Medical facility in Florida. Now she is fundraising for ‘miracle’ treatment there.
‘The most upsetting thing of all was not being able to marry the love of my life,’ says Kaiva, who is from Peterborough, Cambridgeshire.
‘We had planned to tie the knot in June 2020, but by the February, my condition had deteriorated and I just wasn’t well enough.
‘It’s heartbreaking and, while I’m trying to stay positive, my condition means I can barely move.’
Kaiva has suffered with dizziness for as long as she can remember, and by April 2011 it was accompanied by fatigue and severe vertigo, but doctors could not find out what was wrong.
‘I started to feel fatigued and lightheaded in April 2011,’ she says.
‘I had no energy and was exhausted. I went to the doctors who said I was stressed and overworked. I had a physically tough job as an Amazon packer. But despite some time off, I still felt the same.
‘All my test results were normal. So doctors felt it was psychological and that I was depressed.
‘I didn’t feel unhappy, but with no other explanation I quit my job at Amazon and worked hard to improve my mental health.’
Meeting Arthur through mutual friends in 2013, romance blossomed and in 2014 he proposed on a romantic walk by Rutland Water, a giant reservoir in the East Midlands.
But Kaiva’s condition threatened to overwhelm her happiness.
‘I went back and forth to the doctors, but they couldn’t find anything wrong,’ she says.
‘By 2018, my airways would feel blocked with liquid, it felt like I was drowning. Some days I could barely lift my head. I was constantly dizzy.#
Kaiva took up meditation, changed jobs multiple times and even completed the Camino de Santiago trail – a kind of pilgrims’ way – in Spain, in April 2018, hoping for spiritual answers to her life-limiting condition.
‘I tried my best to get better, as I wanted to be healthy,’ she says. ‘I walked for six weeks, it was really hard, but I thought that I was going to find myself and feel better. Sadly, though, nothing changed.
‘I tried to find a job I was passionate about. I always wanted to work in an office, so in August 2019 I started as a payroll clerk for a recruitment company.
‘I loved it, but the hour long commute triggered my condition. I started passing out in the car.
‘It was really scary, there were a lot of near accidents. So, after three months, I had to leave.’
Kaiva was admitted for further scans at Peterborough City Hospital in October 2019, revealing a build up of fluid on her brain – which effectively cancelled her wedding plans.
‘By October 2019 it was so bad I couldn’t work and was completely bedridden,’ she says.
‘That’s when I had an MRI scan showing I had cerebrospinal fluid build up in the cavities of my brain.
‘But despite draining the fluid and numerous medications, my condition didn’t improve and I rapidly started to become more unwell.
‘I started to get brain fog on top of my other symptoms. I couldn’t remember something straight after I’d read it. My head would become too heavy and I wouldn’t be able to hold it up. I became too scared to be on my own outside in case I fainted.
‘I had to wear sunglasses all day everyday, as the brightness would physically hurt.’
In February 2020, the couple made the heartbreaking decision to postpone the intimate family wedding they had booked for June.
‘It was devastating,’ Kaiva says.
‘The pandemic and my condition just made it impossible. I could barely shower on my own let alone walk done the aisle.’
Feeling hopeless, Kaiva turned to online communities for advice, stumbling across Caring Medical in Florida, a specialist clinic treating joint conditions.
After an online consultation with a specialist, she was diagnosed with Craniocervical Instability, which was causing a vertebra in Kaiva’s spine to obstruct fluid moving from the brain, as well as causing pressure on the surrounding nerves.
‘It was amazing to finally have answers,’ she says.
Kaiva was offered a space for 12 weeks of treatment, and now hopes that she could be cured.
‘My treatment plan will change once they’ve worked out which vertebra is blocking my blood flow,’ she explains.
‘I’ll probably have prolotherapy, an injection into the joints, combined with a chiropractic neck curve – a specially designed pillow that supports the joints in the neck.
‘It felt so good to have some answers, but when we discovered the treatment would cost £40,000 it was a huge price tag. I can’t get this treatment anywhere else, so we have no choice but to raise the money.’
The couple started a GoFundMe page to raise the necessary funds so Kaiva can fly to Florida later this month and then, hopefully, they can be married next year.
‘We live as husband and wife, but we still want to get married,’ says Kaiva.
‘By raising the money and receiving this treatment it will change our lives, we’ll be able to tie-the-knot and go back to the life we lived before I became really ill.
‘I look amazing on the outside, but inside I’m so unwell. I don’t think people realise how much I suffer on a daily basis.
‘I can’t shower or even go for a walk on my own anymore. I need someone with me 24/7. If it wasn’t for Arthur and my family I’d be completely lost.’
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