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
World No. 1 golfer charged with police officer assault before PGA Championship second round
World number one golfer Scottie Scheffler was arrested and charged with the assault of a police officer in what he called a 'chaotic situation' before being released in time to start his second round at the PGA Championship on Friday.
LIVE @ 11:30 MT Four 1970s homicides linked to serial killer, Alberta Mounties to reveal Friday
A dead serial sexual offender and killer has been linked to four homicides in the 1970s in Alberta, RCMP say.
4 dead after Houston storms cause widespread damage, major blackouts
Power outages could last weeks in parts of Houston after thunderstorms with hurricane-force winds tore through the city, an official said Friday, knocking out electricity to nearly 1 million homes and businesses.
NEW What a wildfire survivor says she regrets not grabbing before leaving home
Carol Christian had 15 minutes to evacuate her home during the Fort McMurray wildfires in 2016. She ended up losing the house and everything inside. Now, she wants to share the lessons she learned.
WATCH Infectious disease expert warns measles 'a very real threat'
A Canadian epidemiologist is warning the measles presents a 'very real threat' to public health if Canada doesn't maintain a high vaccination rate.
With today's high rates, should you consider an interest-free halal mortgage?
A halal mortgage complies with the Islamic religious, or Shariah, law, which forbids the use of 'riba' (interest). Here's what mortgage experts say those considering 'no-interest' halal mortgages should know.
Wildfires are dampening against cool, rainy weather, but there's plenty left to contain
An opportune system of cool, wet weather Friday is dampening the spread of wildfires across Western Canada, but there's still plenty of work for responders and residents alike.
Newly mapped lost branch of the Nile could help solve long-standing pyramid mystery
Egypt’s Great Pyramid and other ancient monuments at Giza exist on an isolated strip of land at the edge of the Sahara Desert.
Ontario sees first measles death in more than a decade after young child dies
A young child has died of measles in Ontario, marking the first death in the province from the highly contagious virus in more than 10 years, a Public Health Ontario report confirms.