The parents of a girl in the United Kingdom have been forced to launch a fundraising campaign to pay for the operation your daughter needs, affected by congenital central hypoventilation syndrome (CCHS, for its acronym in English). As they describe, “every time he falls asleep he could die.”
This is reported by the BBC, British public television, which also explains that the operation to tackle this rare disease (which affects the way the nervous system controls breathing) would consist of inserting a a device powered by batteries in order to stimulate breathing.
A treatment not publicly funded
The girl in question is named Sadie, and her mother, Star, explains that she currently needs 24-hour surveillance. The little one cannot depend exclusively on her automatic breathing when she sleeps, so requires a fan it works through a tube inserted into his neck through a hole. This machine, however, only has eight hours of autonomy.
On the contrary, the device for which the parents of the minor, from the city of Birmingham (UK), are raising funds works in a similar way to a pacemaker; stimulating the phrenic nerve, it ‘tells’ the diaphragm when to move and breathe.
Although the United Kingdom has a public health system, the National Health System (NHS), the body dependent on it in charge of deciding which treatments are covered by it (The National Institute for Health and Care Excellence or NICE) has recommended that this therapy not be financed from it.
So far, Sadie’s parents have managed collect 33,000 pounds of the 39,000 necessary, and the surgery (in principle scheduled for last month) has had to be delayed until April 19 due to complications with the girl’s cardiac pacemaker.
