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August 18, 2010

Growing up with a machine

No human being can survive if not breathing. And it's difficult for people with congenital central hypoventilation syndrome (CCHS) or Ondine's curse, which would stop breathing every time asleep.
If not immediately helped the sufferer could experience death. As a result, to make to stay alive while sleeping, CCHS patients, must wear life support machine, so do not sleep forever.


It is estimated there are about 200-300 people around the world who has this disease. People suffering from CCHS has a very difficult time for taking in oxygen to make them look tired often and easily tired. If this happens during sleep and no medical help, it can cause death.
Quoted from Wrongdiagnosis, Wednesday (08/18/2010) CCHS symptoms can include breathing stops during sleep, neuroblastoma (tumors of the sympathetic ganglia), Hirschsprung's disease (partial agenesis of the enteric nervous system), dysphagia (difficulty swallowing) and the strangeness of pupils .


CCHS may be a congenital disease, or developed because of severe spinal trauma, such as damage to the brain stem, stroke or complications of neurosurgery. People with CCHS typically require tracheostomy and mechanical ventilation to survive.

Examples of CCHS patients is Liam Derbyshire, 12-year-old boy Gosport, United Kingdom to be connected with a machine all night to shore up his life to keep breathing while he slept.
When he was born only six days old was sentenced by a doctor, suffering from a rare disease CCHS. But up to age 12 years old boy can survive because the diligent use of life support machines while sleeping.


Family in Gosport, Hants, had to spend much money on electricity bills for lighting equipment life support machine, and also a kind of diesel engines for emergencies when the power goes out.
Now, Liam attended the Heathfield school in Fareham, Hants, and should still wearing breathing tube tracheostomy (hole in the front wall of the anterior trachea for breathing) in the throat.


"Every day, the doctor was amazed to see him grow up healthily. It breaks all the doctor's verdict when he was born," said Kim, the mother of Liam, as reported from Dailymail.
According to Kim, she was very lucky because her son can still grow despite the need to use each machine to sleep. Liam is a fantastic child, always smiling, and laughing. And he has all the characteristics of normal children.
  

"This is a very rare condition. Liam is my first patient who was diagnosed with CCHS, when it comes to this hospital 12 years ago," said Dr Gary Connett, a doctor who handled Liam at Southampton General Hospital, Hants.

According to Dr. Connett, which was unusual was that Liam has a cancer growing within his body and he also had problems with his intestines.
"I can not find the report a child who could survive with all these health problems. It's really amazing. He is a child's unique in the world," added Dr Connett.
    

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