A bride-to-be who was forced to postpone her wedding because of a condition that makes her feel like she is drowning now hopes that life changing treatment will mean she can finally tie the knot.
After 10 years of debilitating symptoms ranging from dizziness and vertigo to passing out and unsuccessful treatment for fluid on the brain, Kaiva Locmele, 30 looked to the US for answers.
Given a diagnosis of craniocervical instability – which involves excessive movement between the skull and the two top vertebrae - she is now fundraising for “miracle” treatment there.
Due to her condition she had to cancel her June 2020 wedding to truck driver fiancé, Arthur Picacelma, 35, because she was so ill, Wales Online reports.
Kaiva, of Peterborough, Cambridgeshire, whose condition means she can no longer work, said: “The most upsetting thing of all was not being able to marry the love of my life.
“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.
“We wanted to get married in an intimate ceremony in Latvia, but now we’ll have to wait.”
She said: “It’s heartbreaking and, while I’m trying to stay positive, my condition means I can barely move.”
Suffering with dizziness for as long as she can remember, 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,” said Kaiva. “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.”
She added: “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, despite Kaiva’s overwhelming happiness, her condition became so bad it started to hold her back.
“I went back and forth to the doctors, but they couldn’t find anything wrong,” she said.
“Arthur and I got engaged in 2014 and I loved our life. Everything was great, we had good friends and would have so much fun. I couldn’t work out how I was being told I was depressed when my symptoms felt so physical.
“By 2018, my airways would feel blocked with liquid, it felt like I was drowning.”
She added: “Some days I could barely lift my head. I was constantly dizzy.”
Revisiting the doctor, Kaiva was admitted for further scans at Peterborough City Hospital in October 2019, revealing a build up of fluid on her brain – putting paid to her wedding plans.
“By October 2019 it was so bad I couldn’t work and was completely bedridden,” she said.
“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.”
In February 2020, because of Kaiva’s illness and the looming pandemic, the couple made the heartbreaking decision to postpone the intimate family wedding they had booked for June 2020 in Latvia.
“It was devastating,” she said. “The pandemic and my condition just made it impossible. I could barely shower on my own let alone walk done the aisle.”
She stumbled across Caring Medical in Florida, a specialist clinic treating joint conditions.
After an online consultation with a specialist, she was diagnosed with Craniocervical Instability, causing a vertebra in Kaiva’s spine to obstruct fluid moving from the brain, as well as causing pressure on the surrounding nerves.
She said: “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.”
Starting a GoFundMe page to raise the necessary funds, the couple hope she can fly to Florida later this month and that, if she is cured, they can be married next year.
