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
Asking rent prices up 9.3% across Canada, Ontario sees only decline: report
A new report says the average asking rent for a home in Canada in April was up 9.3 per cent compared with a year ago, while a slight month-over-month increase was also recorded for the first time since January.
What is basic income, and how would it impact me?
Parliamentarians are considering a pair of bills aiming to lift people out of poverty through a basic income program, but some fear these types of systems could result in more taxes for Canadians who are already financially struggling.
'I may have some nightmares:' Man survives being bitten by 2 sharks in Bahamas
A man who was bitten by two sharks in the Bahamas said Thursday he's 'thankful that I'm here' while sharing his story of survival.
Magnitude 4.2 earthquake reported off Vancouver Island's west coast
A 4.2-magnitude earthquake was recorded west of Vancouver Island early Friday morning.
Mexico's president accuses press and volunteer searchers for missing people of 'necrophilia'
The administration of Mexico's president has accused the press and volunteer searchers who look for the bodies of missing people of 'necrophilia,' comments that drew criticism this week.
WATCH Expecting an interest rate cut in June? Don't bet on it after new jobs data
Canada's labour market rebounded in April, adding more than 90,000 jobs, a staggering number of new positions after four consecutive months of little change.
Out-of-control wildfire burning near Fort McMurray
As of 9 a.m. on Friday, the wildfire burning 28 kilometres southwest of the northeastern Alberta city was 25 hectares in size.
Prince William says wife Kate is 'doing well'
Prince William said on Friday his wife Kate was 'doing well' in a rare public comment about the Princess of Wales as she undergoes preventative chemotherapy for cancer.
'Irate male' assaulted Newfoundland officers with block of cheese, police say
Police in Newfoundland say patrol officers were assaulted Thursday by a "very irate male" wielding a block of cheese.