Nine-year-old Veysel Çözvelioğlu is among four people in Turkey with the rare Hutchinson-Gilford Progeria Syndrome (HGPS). The syndrome, which found widespread recognition in popular culture with F. Scott Fitzgerald’s story, the “Curious Case of Benjamin Button,” caused the boy to start his life with all the features of a frail old man.
Unlike the main character in the story, which became famous with an eponymous film starring Brad Pitt as the titular man, Çözvelioğlu will not have a younger appearance as he grows old. The condition, with a low survival rate and seen in an average of one person per 8 million worldwide, cannot be treated for now. But Veysel has not lost hope and dreams of being “a soldier or police officer” when he grows up.
HGPS patients lag behind their peers in terms of height and weight and suffer from osteoporosis, arteriosclerosis and heart conditions usually exclusive to middle-aged adults. The disease does not affect mental facilities and studies show that children suffering from HGPS are more advanced mentally compared to their peers.
Veysel, who lives in the capital Ankara and is a second-grade student, enjoys puzzles, reading and lives his life in the company of his mother Arife Çözvelioğlu, who accompanies him to his classes. “I like drawing most,” he told Anadolu Agency (AA) on Monday.
His mother says Veysel was born healthy but the first symptoms of the disease emerged when he was 4 months old. “We took him to the hospital, but it was only when he was 4 years old that doctors diagnosed him (with HGPS),” Arife Çözvelioğlu said.
“I felt awful when I first found out about his disease, but this did not change how I looked at him. He is a gift of God for me,” she says. “I want him to be happy and healthy. I want to see him grown up,” she said. After the diagnosis, the family searched online for other patients in the country and reached out to the families of four others. “We want to contact other families if there are any more,” she said.
The mother also complains about “grownups” who give questioning looks at her son. “People ask questions about his condition, and this embarrasses Veysel,” she laments. “I don’t want people to look at my son with pity and comment on his physical appearance. Unfortunately, I came across people who did so. Some even questioned whether he was undernourished. No parents would leave their children undernourished. He cannot eat much like his peers because of his condition. This is, in fact, slows down his growth,” she said.
The family is looking for a cure for Veysel and had him enrolled in a study at a hospital in the United States. The boy’s father, Mustafa Çözvelioğlu, says a study was conducted at Boston Children’s Hospital. “There was a doctor whose child died of HGPS. Along with his study, there are two other studies at the hospital and they told us they were near a conclusion,” he said. The father said there was no treatment, but that they were giving Veysel a Food and Drug Administration (FDA) approved pill that “only improves quality of life in the face of conditions the aging leaves on his body.”
Veysel regularly attends trials for treatment methods in the United States, and the family hopes they will give them free treatment if the studies succeed. “We cannot financially cover it otherwise. Doctors there told us his health was better compared to his peers suffering from the same disease,” Mustafa Çözvelioğlu said.
