A rare cleft disorder prevents Ethan Kranig from crying and sweating and has left him with two fingers on each hand. One in 10 million are affected by the genetic mutation, according to the Daily Mail.
The nine-year-old from Prescott, Wisconsin (US) has a condition called ectrodactyly ectodermal dysplasia-cleft syndrome (EEC).
What is EEC? UK's National Foundation for Ectrodactyly Dysplasia explains the disorder on its website:
* The disease is usually spread from parent to offspring, however it can also occur from a random genetic mutation.
* Both males and female can be affected by it.
* EEC can be diagnosed with a blood or genetic test
The rare syndrome is characterized by:
* Cleft lip or palate
* Lack of finger or toes
* Flat nose tip
Common symptoms:
* No teeth
* Very pale pigmented skin and hair
* Abnormally formed nails
* Hearing loss and malformed ears
* Depreciated sweating
* Lack of tear ducts
* Issues with urethra, bladder and GI
While the symptoms are severe, it does not impact life span.
Kranig's case is even more rare because neither of his parent carried the gene and it was a random genetic mutation when he was conceived. His mother Natalie shared with Daily Mail that life has not been easy since his birth. Ethan's anus was clefted to his scrotum when he was born. So his waste has to be collected in a colostomy bag, the Daily Mail reported. Doctors only performed surgery to restructure his anatomy when he got a little older.
Having no sweat glands is one of the major problems, as she has to make sure to keep the surface of his eyes moist to prevent him from having seizures. Ethan has also been forced to wear dentures as he was born with no teeth.
Till date, Ethan has had 29 surgeries and will need more as he grows. To keep up with the cost of treatment his family has been raising money via the YouCaring site.
