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

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. 

Condition makes breathing, going to school hard

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.

Along with obesity, people with POMC deficiency tend to have adrenal insufficiency, which can lead to periods of low blood sugar, seizures and high levels of a bilirubin, a toxic substance. Adrenal insufficiency can lead to death if not treated early, according to the U.S. National Library of Medicine.

Health Canada says one in 12 people has a rare disease; many of them are children.

CBC Hamilton reached out to the Canadian Organization for Rare Disorders to understand more about POMC deficiency in Canada, but did not receive a response before publication. The government of Canada has called POMC "very rare," citing the GlobalData Healthcare database.

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

In Cena's case, the medication 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 like Imcivree (setmelanotide) to be covered under the program, the manufacturer must submit a request saying it is being used for a specific medical condition — and the ministry says the manufacturer has not done that.

CBC Hamilton reached out to the manufacturer of Imcivree (setmelanotide) for comment but did not hear back before publication. The drug was approved by Health Canada for use here in 2023. 

'My heart is broken for this family'

Ibrahim said neither he nor his wife has been able to work in Canada due to a language barrier and the constant medical appointments and level of care their daughter needs.

They get Ontario child benefit payments and food bank support from Mishka Social Services, an organization that helps the local Muslim community. Along with Cena, there are five other children — four at home who are two through 14 years old, and two adult children living in Canada. 

Over the past six months, Rania Mohammed, a social service worker with Mishka, has been working closely with the couple and their kids.

"My heart is broken for this family," she told CBC Hamilton.

She said this has been a difficult time for the family, especially Ibrahim, who feels "overwhelmed, scared, nervous" about what will happen to Cena.

"He told me, 'Can you imagine the feeling when you see your loved one, my daughter, in front of me, and I cannot afford her medication? And I know if this won't be covered, I'm going to lose her,'" Mohammed said.

Ibrahim said the anxiety has taken a big toll on him and his health, and he often finds it hard to sleep.

Ozempic another option for Cena

But Ibrahim won't stop trying to help his daughter, Mohammed said.

Mishka Social Services has also been advocating for Cena. Since last year, the organization has set up a GoFundMe to raise money for her medication and is organizing a fundraising Iftar dinner during the holy month of Ramadan, with part of the proceeds going to help Cena, according to Mohammed. The dinner is Friday at Carmen's event centre. 

While setmelanotide remains out of reach right now, Cena is taking some medication to ease symptoms. 

Ozempic, a drug approved to treat diabetes, is also a temporary option to manage Cena's weight, Mohammed said. But even though it's less expensive — around $400 a month — the family says it does not fit in their budget.

With help from Mishka and other services, Cena's family has reached out to multiple organizations and local officials such as members of Parliament to raise awareness of their situation and ask for "any support available." They have yet to receive any as a result, Mohammed said.

"The family is destroyed," she said. "I leave [their house] and there are tears, because I can't imagine, I am a mom and I have a kid. So I know it's difficult."