2023-04-16 17:24:49
There are many types of diseases that we have never seen, experienced or even heard of. We know many of these things often through the news. A six-year-old girl suffering from a rare disease is getting attention through such news.
A child named Sadie Boyer from Birmingham, UK is struggling with a rare neurological disease called ‘Congenital Central Hypoventilation Syndrome’. So far 1000 people have been diagnosed with this disease in the whole world.
The biggest feature of this disease is a state where you forget to breathe or leave. While this may not be a challenge while conscious, if the mind is forgetful for any reason – even sleeping, there is a high chance of an accident without taking a breath. The problem is especially with sleep.
The biggest fear of this disease is the possibility of dying without breathing while sleeping. That’s why Sadie’s mother does not close her eyes when the baby sleeps. A device is attached to the baby’s neck to help the baby breathe artificially. It will have a charge of eight hours. But the challenge is not over.
This disease is caused by genetic problems and cannot be cured by treatment. So the only way forward is to move forward as much as possible.
‘Let’s just say I don’t really sleep. She cannot be left unattended for long periods of time. Even if it is daytime I have to make sure that she is breathing properly in case she falls asleep without realizing it. Otherwise, she just has to get dizzy and fall or do something else to cause an accident…’- says Sadie’s mother.
They say that a child suffering from a rare disease is facing a lot of hardships from the society because of this. They say that they cannot go out to play freely with their peers, none of them can stay at home, ridicule from children because of the breathing device attached to their neck, and the limitation of movement caused by this device are all their sorrows.
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Last Updated Apr 16, 2023, 10:54 PM IST
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