(Hurriyet Newspaper, 5 February 2015)
Little Poyraz gets light therapy in the living room.
Servet Ergun invented a therapy machine for his 3 month-old
son Poyraz, who has 'blue light' disease, because there was no
room for the child at any hospital. Ergun had the phototherapy
machine made at a workshop and is trying to continue the
therapy at home, explaining that "if something happens to my
son who else do I blame?"
Poyraz, the third child of Servet and Zeliha Ergun of Antalya,
is battling Crigler-Najjar syndrome ('blue light' disease), which
afflicts only 202 people in the world. The Ergun couple's
genetic drama began 16 years ago when their daughter Hilal
was born with the disease. At age 10 Hilal received a liver
transplant from her mother and her health improved.
The couple's second child Mehmet was born healthy 12 years
ago but three days after Poyraz was born three months ago
he was yellow and Crigler-Najjar was diagnosed.
Poyraz was taken to Akdeniz University Hospital but there was
no room for him there. After that, his parents took him to Ataturk
Hospital and finally to a private hospital for light therapy. But,
as Servet Ergun lamented, "the charge for the therapy was 380 TL
($185) per night and since my economic situation is not very good
we came home."
But Servet Ergun had taken a picture of the phototherapy machine
he saw at the hospital and came up with his own invention: "I figured
out the speed and wave length of the light and had a friend make a
machine at his workshop. The cost for the materials was 550 TL
($260). The original costs 10,000 TL ($5,000)."
Another child with 'blue light' disease, Mert Guler of Izmir, regained
his health after a liver transplant in 2008. Servet Ergun, who works
at a market, said that Poyraz's only hope is a liver transplant, too. He
feels that therapy at home is not the answer: "I have social insurance
but there is no room at the hospitals. Poyraz has developed a hernia
in his stomach from crying. We can see this but what about brain
damage or damage to his internal organs? If this happens who do I
blame? I don't know."
Antalya province.
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