A nine-year-old girl from Brixton in the UK who has been suffering from constant hiccups for the best part of four months is believed to be one of just 50 people in the world with the ultra-rare condition Mycolonus Diaphramatic Flutter, also known as “Belly Dancer’s Syndrome.”
The girl, Eden Veremu’s mother, Trudi, is now trying to raise a badly needed $10,000 in order to get the right medical treatment for her daughter.
The condition is so serious for poor Eden that the hiccups make her speech vibrate and causes an involuntary punctuation in each word she speaks due to the spasms caused in her lungs and throat from the hiccups.
Due to the fact that Eden hasn’t been formally diagnozed with the rare condition, it’s hard for her family to get her the right care, “We are 99 percent sure she has it, but it’s matter of confirming that,” her mother said.
On top of the $10,000 the Veremus need, there is also a time factor as they want Eden to get attention before the condition becomes life-threatening.
“It has been relentless and I am so worried for my girl. The attacks came out of the blue and have not stopped for months. When they are most severe, she is in excruciating agony and unable to talk at all. The pain, stress and migraines it causes knocks her out for days – only for the same to happen again. 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.”
Mycolonus diaphragmatic flutter is very rare, affecting only an estimated 50 people in the world, as noted above.
It was first discovered in 1723 by Antony van Leeuwenhoek and the diaphragmatic contractions are thought to range between 35 and 480 contractions per minute.