A nine-year-old London girl is fighting for her life after being diagnosed with a rare liver condition last year.
There is hope of Teaghan Gearey in the form of a drug, however is hasn’t been approved in Canada. Now her mother is fighting to get that changed.
Teaghan has Cholesteryl Ester Storage Disease or CESD which causes an enzyme to leak that’s needed to break down fat and can have devastating effects.
Lisa Gearey, Teaghan’s mother says her body is not able to get rid of the fat and it stores in her liver causing scarring and cirrhosis.
The family discovered she had CESD while on vacation two years ago.
The disease causes many sufferers to face-life threatening symptoms within a decade.
However, a drug therapy called Kanuma could help, but it’s not available in Canada.
The U.S. Food and Drug Administration Approved Kanuma in December and a Canadian initiative called the Orphan Drug Program is being launched.
Lisa Gearey has applied for special approval to use Kanuma saying a delay isn’t an option.
“I want them to approve the drug. I want to save her life and I want everything to be okay,” said Lisa.
In the meantime she has created an online petition hoping to spur the Federal Government to fast track the Orphan Drug Program.
A link to the petition can be found here.
