7-year-old in Hamilton has rare condition with $300K annual treatment her family can't afford

Aura Carreño Rosas · CBC News

· Posted: Mar 13, 2025 4:00 AM EDT | Last Updated: 11 minutes ago

Ibrahim Hermus arrived in Canada successful 2023 with hopes his young daughter, Cena, would person the aesculapian attraction she desperately needed for a rare condition. 

But Ibrahim soon discovered that would not beryllium the case.

Cena, 7, was calved successful Turkey. At property 2, she was diagnosed with proopiomelanocortin (POMC) deficiency. The rare, life-threatening upset causes terrible obesity at an aboriginal age.

According to the U.S. National Library of Medicine, radical with the upset person debased levels of the hormone adrenocorticotropic (ACTH), which can come with different health-threatening complications.

Cena and her household arrived successful Canada connected Sep. 12, 2023, arsenic refugees from Turkey. Before that, they lived successful Syria but had to fly the war-torn country.

Ibrahim said Cena weighed astir 165 pounds erstwhile they came to Canada, after deadly earthquakes hit both countries, and she's present astir 220.

During a caller sojourn to the family's Hamilton Mountain home, Ibrahim said he's "very scared" for his daughter.

The attraction Cena needs — a medicine called setmelanotide — is at slightest $300,000 during the archetypal year, according to some the household and McMaster Children's Hospital, which has been giving attraction to the seven-year-old.

CBC Hamilton has seen the infirmary documents recommending the attraction for Cena.

But that's a cost the household can't afford. 

Condition makes breathing, going to schoolhouse hard

At home, Cena has a shy demeanour and timid smile. She likes to clasp onto a doll, which she says is her favourite, and loves playing with her small sister, Fatima.

According to her father, Cena loves to spend time playing with her toys, arsenic good arsenic coating and drawing. 

But doing her favourite things tin get hard for Cena. Her condition makes her consciousness bushed and incapable to locomotion astir of the time, and she's incapable to be schoolhouse astir days.

Cena besides suffers from slumber apnea, often waking up successful the mediate of the night, incapable to breathe. Ibrahim said she's also dealing with diabetes, liver problems and changeless pain.

Along with obesity, radical with POMC deficiency thin to person adrenal insufficiency, which tin pb to periods of debased humor sugar, seizures and precocious levels of a bilirubin, a toxic substance. Adrenal insufficiency tin pb to decease if not treated early, according to the U.S. National Library of Medicine.

Health Canada says one successful 12 radical has a uncommon disease; many of them are children.

CBC Hamilton reached retired to the Canadian Organization for Rare Disorders to recognize much about POMC deficiency successful Canada, but did not person a effect earlier publication. The authorities of Canada has called POMC "very rare," citing the GlobalData Healthcare database.

In the U.S., less than 1,000 people have the condition, according to Department of Health and Human Services. 

In Cena's case, the medicine she needs is not covered by the Ontario Drug Benefit program. 

A spokesperson from the Ontario Ministry of Health told CBC Hamilton that for drugs similar Imcivree (setmelanotide) to beryllium covered nether the program, the manufacturer must taxable a petition saying it is being utilized for a circumstantial aesculapian information — and the ministry says the manufacturer has not done that.

CBC Hamilton reached retired to the shaper of Imcivree (setmelanotide) for remark but did not perceive backmost earlier publication. The cause was approved by Health Canada for usage present successful 2023. 

'My bosom is breached for this family'

Ibrahim said neither helium nor his woman has been capable to enactment successful Canada owed to a connection obstruction and the changeless aesculapian appointments and level of attraction their girl needs.

They get Ontario child payment payments and nutrient slope enactment from Mishka Social Services, an enactment that helps the section Muslim community. Along with Cena, determination are 5 other children — 4 astatine location who are two done 14 years old, and 2 big children living successful Canada. 

Over the past six months, Rania Mohammed, a societal work idiosyncratic with Mishka, has been moving intimately with the mates and their kids.

"My bosom is breached for this family," she told CBC Hamilton.

She said this has been a hard clip for the family, particularly Ibrahim, who feels "overwhelmed, scared, nervous" astir what volition hap to Cena.

"He told me, 'Can you ideate the feeling erstwhile you spot your loved one, my daughter, successful beforehand of me, and I cannot spend her medication? And I cognize if this won't beryllium covered, I'm going to suffer her,'" Mohammed said.

Ibrahim said the anxiousness has taken a large toll connected him and his health, and helium often finds it hard to sleep.

Ozempic another enactment for Cena

But Ibrahim won't halt trying to assistance his daughter, Mohammed said.

Mishka Social Services has besides been advocating for Cena. Since past year, the enactment has acceptable up a GoFundMe to rise wealth for her medicine and is organizing a fundraising Iftar dinner during the beatified period of Ramadan, with part of the proceeds going to help Cena, according to Mohammed. The meal is Friday astatine Carmen's lawsuit centre. 

While setmelanotide remains retired of scope close now, Cena is taking immoderate medicine to easiness symptoms. 

Ozempic, a cause approved to dainty diabetes, is besides a impermanent enactment to negociate Cena's weight, Mohammed said. But adjacent though it's little expensive — astir $400 a period — the household says it does not acceptable successful their budget.

With assistance from Mishka and different services, Cena's household has reached retired to aggregate organizations and section officials specified arsenic members of Parliament to rise consciousness of their concern and inquire for "any enactment available." They person yet to person immoderate arsenic a result, Mohammed said.

"The household is destroyed," she said. "I permission [their house] and determination are tears, due to the fact that I can't imagine, I americium a ma and I person a kid. So I cognize it's difficult."