"Heaven forbid something does happen to me, my babies have a really good idea of who I am through my photography," she said. "Every night I go to bed fearful that it might be my last night."
Blair's LDL levels are usually around 350. She had three heart attacks before she was 43.
"I know I don't have it under control and it scares the living crud out of me," she said.
Kynamro was recently FDA approved to treat HOFH.
"A technology that's been in development for 30 years and this is the first real breakthrough in that technology," said Genzyme General Manager Paula Soteropoulos.
Kynamro was developed in part by Genzyme. Soteropoulos says the once-a-week injection stops the production of cholesterol.
A clinical trial found that on average, patients taking Kynamro saw their LDL levels drop 25 percent.
"This is getting them to levels they have never seen before," Soteropoulos said.
Kynamro is not a replacement for a patient's other medications. It's designed to be added to their treatment.
Blair says this and other drugs in the works are giving her a better picture of what her future could be.
"I want to live a really long time and without them I won't see the longevity that I so crave," she said.
The FDA reports the most serious risk of Kynamro is liver toxicity. Other side effects include nausea, headache, and flu-like symptoms.
