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
BREAKING Security guard shot, seriously injured outside of Drake's Toronto mansion
A security guard working at Drake’s Bridle Path mansion in Toronto was seriously injured in a shooting outside the residence early Tuesday morning.
King Charles too busy to see son Prince Harry during U.K. trip
Prince Harry will not be seeing his father King Charles during his current visit to Britain as the monarch will be too busy, Harry's spokesperson said on Tuesday.
Your body needs these three forms of movement every week
Movement is movement, right? Not exactly. Here’s what your body is looking for in addition to your morning walk or yoga session, according to experts.
'It looked so legit': Ontario man pays $7,700 for luxury villa found on Booking.com, but the listing was fake
An Ontario man says he paid more than $7,700 for a luxury villa he found on a popular travel website -- but the listing was fake.
Canadian cadets rock mullets and place second at U.S. military competition
Sporting mullets, Canadian Armed Forces officer cadets placed second in an annual military skills competition in the U.S.
The Met Gala was in full bloom with Zendaya, Jennifer Lopez, Mindy Kaling among the standout stars
The Met Gala and its fashionista A-listers on Monday included Jennifer Lopez, Zendaya and a parade of others in a swirl of flora and fauna looks on a green-tinged carpet lined by live foliage.
Quebec to limit sperm donations per donor after 3 men from same family father hundreds of children
Quebec is looking at tightening the regulations around sperm donation in the province following the release of a documentary that revealed three men from the same family fathered hundreds of children.
How to overcome 'savings guilt' when you're living paycheque to paycheque
As the higher cost of living continues to squeeze household budgets, many Canadians find they have even less left over at the end of every month to squirrel away for the future.
There's actually no such thing as vegetables. Here's why you should eat them anyway
The rumours are true: Vegetables aren't real — that is, in botany, anyway. While the term fruit is recognized botanically as anything that contains a seed or seeds, vegetable is actually a broad umbrella term.