TLDR: Cena Hermus is battling a rare disease, but the $300K treatment she needs isn’t covered by Ontario. After surviving war and earthquakes, her family is now fighting to save her life.
It’s impossible to look away — a 7-year-old girl fighting for her life while the treatment that could save her remains out of reach.
Cena Hermus arrived in Canada with her family in 2023 after fleeing the war in Syria and surviving deadly earthquakes in Turkey. But instead of finding safety, they’ve been thrust into a new crisis. Cena has proopiomelanocortin (POMC) deficiency — a rare genetic disorder that causes severe obesity and life-threatening health complications.
When Cena arrived in Canada, she weighed 165 pounds — already shocking for a child her age. Now, she weighs 220 pounds. Her condition leaves her exhausted, in pain, and unable to attend school on many days. The CBC reported that she also suffers from sleep apnea, diabetes, and liver problems — a combination that’s slowly breaking down her young body.
The medication Cena needs — setmelanotide (Imcivree) — could stabilize her condition. But the cost? Over $300,000 for the first year alone. McMaster Children’s Hospital has recommended the drug, but Ontario’s health plan won’t cover it unless the manufacturer formally requests approval — and they haven’t.
Cena’s parents, Ibrahim and his wife, are stuck. They’re having a hard time finding work because of the language barrier and the constant care Cena needs. With five other children at home, they rely on Ontario child benefits and support from Mishka Social Services, which helps the local Muslim community.
But they’re not giving up. Mishka has launched a GoFundMe to raise money for Cena’s treatment and is hosting a fundraising Iftar dinner during Ramadan at Carmen’s Event Centre this Friday, with proceeds going toward Cena’s care.
