Brixton Mum Trudi Veremu has launched a Gofundme campaign so her 9-year-old daughter, Eden, can get treatment for an incredibly rare disease which gives her painful muscle spasms, “like super-charged hiccups”.
Veremu is hoping to raise £6,000 so they can travel to Colorado Children’s Hospital in the US, where Eden can get specialist treatment for the Myoclonus Diaphragmatic Flutter (MDF) attacks she has been suffering from.
Since November last year, the 9 year-old from Brixton has had “what at first glance could be described as a case of the super-charged hiccups.”
Veremu said that “unlike any hiccups that you and I may have experienced though, Eden’s spasms come at a rate of around 150 a minute causing an involuntary punctuation to each and every word she speaks and a visibly uncomfortable contraction of her muscles starting at her diaphragm and rippling painfully through her body.”
“It’s been relentless and I’m so worried for my girl,” says Veremu.
Eden is only the 56th known case of MDF and the first in the UK.
Sometimes referred to as Belly Dancer’s Syndrome, the causes are not fully understood and can often arise because of another underlying issue.
Veremu says after researching online she found another sufferer, Chaz Moore, in Colorado.
The family is now hoping to raise the money to travel to the Colorado Children’s Hospital where Moore and other MDF sufferers have received treatment.
“The NHS have been great but we do not have time on our side and given how rare this disorder is, we have to go to where it’s known best”.You can donate to Eden’s fundraising page here.