Story By: Feza Uzay, Sub-Editor: Marija Stojkoska, Agency: Newsflash
The mum of these two sisters who were born without a nose is hoping to get help to treat her daughters’ extremely rare condition.
Amine Cetin, 13, and Erva, nine months, live in the district of Serik in the southern Turkish city of Antalya with their family.
Both sisters were born with an extremely rare condition called congenital arhinia (CA) which is a condition where the person has a complete lack of an external nose or nasal passageways.
Doctors told their mum Naile Kurtulus Cetin that the odds of two people being born in the same family with the same condition were one in a million.
She told Newsflash: “We have been told that this is a very rare disease. There are only 13 cases in the world, four of them in Turkey. I gave birth to Erva at a private hospital.
“Her condition drew a lot of attention. They did tests on her at the hospital and found there were two more cases in Turkey but they do not know if the other two people are still alive.”
Naile and her partner Serhat Cetin have a third daughter named Deniz Cetin, 8, who was born completely healthy and does not have CA like her sisters.
Amine was able to receive treatment for the rare condition and even got a nose from a plastic surgeon, however, her mum worries that she still has difficulty breathing.
Erva in particular struggles to breathe while she sleeps or eats as she quickly runs out of breath when she closes her mouth.
Naile said: “She [Erva] has a special pacifier. We tape the pacifier to her mouth and she breathes that way. She cannot hold the pacifier herself because she does not have an upper palate.”
She explained Amine had the same problems when she was an infant and also went through several complicated operations and despite doctors saying Amine would die, she said: “God kept her alive.”
Naile added: “I do not wish for anything other than my daughters to receive treatment so they can breathe.”
Naile and her family remain hopeful they can get the help needed to get the young girls the treatment they need from doctors and dentists.
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