7-year-old in Hamilton has rare condition with $300K annual treatment her family can't afford
CBC
Ibrahim Hermus arrived in Canada in 2023 with hopes his young daughter, Cena, would receive the medical care she desperately needed for a rare condition.
But Ibrahim soon discovered that would not be the case.
Cena, 7, was born in Turkey. At age 2, she was diagnosed with proopiomelanocortin (POMC) deficiency. The rare, life-threatening disorder causes severe obesity at an early age.
According to the U.S. National Library of Medicine, people with the disorder have low levels of the hormone adrenocorticotropic (ACTH), which can come with other health-threatening complications.
Cena and her family arrived in Canada on Sep. 12, 2023, as refugees from Turkey. Before that, they lived in Syria but had to flee the war-torn country.
Ibrahim said Cena weighed around 165 pounds when they came to Canada, after deadly earthquakes hit both countries, and she's now around 220.
During a recent visit to the family's Hamilton Mountain home, Ibrahim said he's "very scared" for his daughter.
The treatment Cena needs — a medication called setmelanotide — is at least $300,000 during the first year, according to both the family and McMaster Children's Hospital, which has been giving care to the seven-year-old.
CBC Hamilton has seen the hospital documents recommending the treatment for Cena.
But that's a cost the family can't afford.
At home, Cena has a shy demeanour and timid smile. She likes to hold onto a doll, which she says is her favourite, and loves playing with her little sister, Fatima.
According to her father, Cena loves to spend time playing with her toys, as well as painting and drawing.
But doing her favourite things can get difficult for Cena. Her condition makes her feel tired and unable to walk most of the time, and she's unable to attend school most days.
Cena also suffers from sleep apnea, often waking up in the middle of the night, unable to breathe. Ibrahim said she's also dealing with diabetes, liver problems and constant pain.
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