Kitchener family says their 10-year-old needs life-saving drug that cost $600,000
Like many young girls, Raneem loves to be around her friends and family but unlike most – she needs a lifesaving medication.
Raneem, 10, lives with a neurological condition and liver disease and needs Cholbam, a medication, for a longer and healthier life.
According to her doctors, that medication is not currently covered by OHIP and comes with a price tag of around $600,000 USD per year.
Raneem lives in Kitchener under the care of Sunbeam Community & Developmental Services.
“It’s really a life changing option for Raneem but unfortunately it’s not currently covered,” said Sunbeam’s CEO Brian Swinson, when talking about Cholbam.
According to Raneem’s doctors, Cholbam is the best medication to help prolong her life. It could also help stabilize her enough for a needed liver transplant.
Her dad, Yousef Alzoubi, told CTV News that he doesn’t wish this situation on anyone and that he just wants the best for his daughter.
“We are waiting for this medication for a long time and the government cannot afford it to us so this is a call to all people, we need this help, we need this for my daughter,” said Alzoubi.
Erika Gardiner is the nurse manager at Sunbeam.
“Every child deserves a happy and healthy life and to be able to access the drug without a financial burden would give her just that," said Gardiner.
The family, who lives in London, must travel back and forth to visit Raneem. With the medication, she could potentially live at the family home.
“For the last three years she has been away from us. She is here in the centre. Our hope is to be among us, among our family, living with us,” said Alzoubi.
For now, the family and her doctors will wait for the province to review the drug for coverage.
CTV News contacted Ontario Health Minister Sylvia Jones and Mirum Pharmaceuticals, the company who produces Cholbam, but we did not hear back by publication.
CTVNews.ca Top Stories
NEW From yearning for a change to cost of living, why some Canadians have left or may leave the country
For some immigrants, their dreams of permanently settling in Canada have taken an unexpected twist.
Here are the ultraprocessed foods you most need to avoid, according to a 30-year study
Studies have shown that ultraprocessed foods can have a detrimental impact on health. But 30 years of research show they don’t all have the same impact.
NEW Capital gains tax change 'shortsighted' and 'sows division' business groups tell Freeland
Forging ahead with increasing Canada's capital gains inclusion rate 'sows division,' and is a 'shortsighted' way to improve the deficit, business groups are warning Finance Minister Chrystia Freeland.
Ontario man frustrated after $3,500 paving job leaves driveway in shambles
An Ontario man considering having his driveway paved received a quote from a company for $7,000, but then, another paver in the neighbourhood knocked on his door and offered half that rate.
Defence attacks Stormy Daniels' credibility as she returns to the stand in Trump's hush money trial
Stormy Daniels will return to the witness stand Thursday in Donald Trump's hush money trial as the defence tries to undermine the credibility of the porn actor's salacious testimony about their alleged sexual encounter and the money she was paid to keep quiet.
Police handcuff man trying to enter Drake's Toronto mansion
Toronto police say a man was taken into custody outside Drake's Bridle Path mansion Wednesday afternoon after he tried to gain access to the residence.
What is whooping cough and should Canadians be concerned as Europe declares outbreak?
There is currently a whooping cough epidemic in Europe, with 10 times as many cases compared to the previous two years. While an outbreak has not been declared nationwide in Canada, whooping cough is regularly detected in the country.
Florida deputies who fatally shot U.S. airman burst into wrong apartment, attorney says
Deputies responding to a disturbance call at a Florida apartment complex burst into the wrong unit and fatally shot a Black U.S. Air Force airman who was home alone when they saw he was armed with a gun, an attorney for the man's family said Wednesday.
Air Canada ranks near bottom on customer satisfaction: survey
Air Canada ranks below most other major North American airlines on customer satisfaction, with airfares a particular sore point, according to a new survey.