Ibrahim Hermus arrived in Canada in 2023 in the hope that his little daughter, dinner, received medical attention that he desperately needed for a rare condition.
But Ibrahim soon discovered that this would not be the case.
Dinner, 7, was born in Türkiye. At 2 years, he was diagnosed with proopiomelanocortin (POMC) deficiency. The rare potentially deadly disorder causes severe obesity at an early age.
According to him National Library of Medicine of the United StatesPeople with disorder have low levels of the adrenocortopic hormone (Acth), which can come with other potentially mortal complications.
Dinner and his family arrived in Canada on September 12, 2023, as refugees in Türkiye. Before that, they lived in Syria but had to flee from the country devastated by war.
Ibrahim said Cena weighed around 165 pounds when they arrived in Canada, after mortal earthquakes hit both countries, and now has around 220.
During a recent visit to the house of Hamilton Mountain of the family, Ibrahim said he is “very scared” for her daughter.
The treatment that Cena needs, a medicine called Setmelanotide, is at least $ 300,000 during the first year, according to the Family Hospital and McMaster Children, who has been giving attention to the seven -year -old child.
CBC Hamilton has seen the hospital documents recommending dinner treatment.
But that is a cost that the family cannot pay.
The condition makes breathing, going to school
At home, dinner has shy behavior and a shy smile. She likes to hold on to a doll, who according to her is her favorite, and loves to play with her little sister, Fatima.
According to his father, Cena loves spending time playing with his toys, as well as painting and drawing.
But doing your favorite things can be difficult for dinner. Her condition makes her feel tired and unable to walk most of the time, and she cannot attend school most of the days.
Dinner also suffers from sleep apnea, often waking up in the middle of the night, unable to breathe. Ibrahim said he is also dealing with diabetes, liver problems and constant pain.
Together with Obesity, people with POMC deficiency tend to have adrenal insufficiency, which can lead to low -sugar levels, seizures and high levels of bilirubin, a toxic substance. The adrenal insufficiency can lead to death if it is not early, according to the National Medicine Library of the United States.
Health Canada says that one in 12 people has a rare disease; Many of them are children.
CBC Hamilton contacted the Canadian organization in search of rare disorders to understand more about POMC deficiency in Canada, but did not receive an answer before the publication. The Canada Government has called Pomc “very rare”, citing the Globaldata Healthcare database.
In the United States, less than 1,000 people have the condition, according to the Department of Health and Human Services.
In the case of dinner, the medicine you need is not covered by the Ontario drug benefit program.
A spokesman for the Ontario Ministry of Health told CBC Hamilton that for drugs such as BomIVREE (Setmelanotide) that it will be covered by the program, the manufacturer must submit a request saying that it is being used for a specific medical condition, and the ministry says that the manufacturer has not done so.
CBC Hamilton contacted the BMIVREE manufacturer (SetmelanoTide) to comment, but did not receive an answer before the publication. The medicine was approved by Health Canada for use here in 2023.
‘My heart is broken for this family’
Ibrahim said that neither he nor his wife have been able to work in Canada due to a language barrier and the constant medical appointments and the level of care that his daughter needs.
They obtain benefits payments for ontarium children and support from the Food Bank MISHKA SOCIAL SERVICESAn organization that helps the local Muslim community. Together with Cena, there are five other children, four at home between two and 14 years and two adult children living in Canada.
In the last six months, Rania Mohammed, a social service worker with Mishka, has been working closely with the couple and her children.
“My heart is broken for this family,” Hamilton told CBC.
She said that this has been a difficult time for the family, especially Ibrahim, who feels “overwhelmed, scared and nervous” about what will happen with dinner.
“He told me: ‘Can you imagine the feeling when you see your loved one, my daughter, in front of me, and I can’t afford her medication? And I know that if this will not be covered, I will lose it,” said Mohammed.
Ibrahim said anxiety has already affected him already his health, it is often difficult to sleep.
Ozempic another option for dinner
But Ibrahim will not stop trying to help her daughter, Mohammed said.
MISHKA Social Services has also been advocating dinner. Since last year, the organization has established a Gofundme to raise money for its medicine and is organizing a fundraising dinner during the sacred month of Ramadan, and part of the profits will help Cena, according to Mohammed. Dinner is Friday at Carmen’s Event Center.
While Setmelanotide remains out of reach at this time, Cena is taking some medications to relieve symptoms.
Ozempic, an approved medication to treat diabetes, is also a temporary option to control dinner weight, Mohammed said. But although it is less expensive, around $ 400 a month, the family says it does not fit in its budget.
With the help of Mishka and other services, the dinner family has communicated with multiple local organizations and officials as members of Parliament to raise awareness about their situation and ask for “any available support.” They have not received any as a result, Mohammed said.
“The family is destroyed,” he said. “Leave [their house] And there are tears, because I can’t imagine, I’m a mother and I have a child. So I know it’s difficult. “
