UA six-year-old girl is at risk of dying every time she faints from a rare breathing disorder. Parents from Birmingham, UK are determined to raise funds for life-changing surgery, even if it doesn’t solve the problem.
Six-year-old Sadie was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS). According to the Portuguese Society of Pulmonology, it is “a rare pathology, usually diagnosed in the neonatal period and characterized by very pronounced hypoventilation during sleep”, which is “a result of dysfunction/dysregulation of the autonomic nervous system”.
Placing a diaphragm stimulation pacemaker on the woman’s chest can stimulate her breathing and give her more independence.
“I never slept. Sadie cannot be unsupervised,” the girl’s mother told the Star BBC.
“There is a risk of sleeping even during the day. If you faint, you may stop breathing,” he added.
Sadie can’t breathe when she’s unconscious, and the ventilator she relies on to sleep only has eight hours of battery life.
The surgery, postponed to April 19, “doesn’t solve the problem, but makes everything a little bit easier,” father Andrew opined.
So far, the family has raised £33,000 (about €37,000) of the £39,000 goal (about €44,000).
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