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
Live updates: What star witness in Trump hush money case has said on the stand so far
The star prosecution witness in Donald Trump's hush money trial is set to take the stand Monday with testimony that could help shape the outcome of the first criminal case against an American president.
Police release 3D images of young child found in an Ontario river two years ago
Police have released a three-dimensional image of a young child whose remains were discovered in the Grand River in Dunnville, Ont. almost two years ago.
Steve Buscemi punched in the face while walking in N.Y.C.
Hollywood actor Steve Buscemi has been treated for injuries after being punched in the face while walking in New York City.
'Be very, very careful': Wildfire conditions 'still extreme,' says Alberta fire chief
As wildfire conditions remain 'extreme' in northern Alberta, residents are being urged to be extra cautious and follow a fire ban.
Air quality advisories issued in 5 provinces, 1 territory
Air quality advisories are in effect across Western Canada as smoky conditions plague some areas, according to the latest forecasts. Here's where.
Canucks' Zadorov fined $5,000 for post-game crosscheck on Oilers' McDavid
A Vancouver Canucks defenceman has been given the highest possible fine under the NHL's collective bargaining agreement after a scrum broke out at the end of Game 3 against the Edmonton Oilers Sunday night.
BREAKING City of Ottawa negligent in allowing Uber to operate outside of taxi bylaw, judge rules
An Ontario Superior Court judge has ruled that the City of Ottawa was negligent in its enforcement of the city's taxi bylaw when it allowed Uber to begin operating in 2014, harming the city's established taxi industry.
Jerry Seinfeld speech prompts pro-Palestinian demonstration at U.S. university graduation ceremony
A tiny contingent of Duke University graduates opposed pro-Israel comedian Jerry Seinfeld speaking at their commencement in North Carolina Sunday, with about 30 of the 7,000 students leaving their seats and chanting "free Palestine" amid a mix of boos and cheers.
Just how bad are ultraprocessed foods? Here are 5 things to know
Many foods fall under the category of ultraprocessed foods, depending on their exact ingredients. This type of food has been studied a lot lately, and the results aren’t great.