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
Breast cancer screening should start at age 40, Canadian Cancer Society says
The Canadian Cancer Society says all provinces and territories should lower the starting age for breast cancer screening to 40.
DEVELOPING Live updates as Stormy Daniels testifies at Trump hush money trial
Adult film star Stormy Daniels is on the stand a second time Thursday as former U.S. president Donald Trump’s hush money case continues in Manhattan. Follow live updates here.
Ontario family receives massive hospital bill as part of LTC law, refuses to pay
A southwestern Ontario woman has received an $8,400 bill from a hospital in Windsor, Ont., after she refused to put her mother in a nursing home she hated -- and she says she has no intention of paying it.
Canadian-Israeli man shot dead in Egypt; claim links killing to Gaza
A Canadian man 'of Jewish Israeli descent' has been shot dead in the Egyptian city of Alexandria in a suspected criminal case, a security source said, while a previously unknown militant group said it carried out the attack in reaction to the war in Gaza.
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.
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.
Why these immigrants to Canada say they're thinking about leaving, or have already moved on
For some immigrants, their dreams of permanently settling in Canada have taken an unexpected twist.
BREAKING Sheldon Keefe out as head coach of Toronto Maple Leafs
The Toronto Maple Leafs have fired head coach Sheldon Keefe. The team made the announcement Thursday after the Original Six franchise lost to the Boston Bruins in seven games in the first round of the Stanley Cup playoffs.
Boeing 737 catches fire and skids off the runway at a Senegal airport, injuring 10 people
A Boeing 737-300 plane carrying 85 people skidded off a runway at the airport in Dakar, Senegal's capital, injuring 10 people, according to the transport minister, an airline safety group and footage from a passenger that showed the aircraft on fire.