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He has been tested more in 14 years than some people six times his age. He knows more about the tongue-twisting terms familial hypercholesterolemia and LDL apheresis than any freshman in high school should.
Cam has homozygous familial hypercholesterolemia (FH) —a genetic disorder that causes high cholesterol levels, especially high levels of low-density lipoprotein (LDL, or “bad cholesterol”) in the blood. He was born with two abnormal copies of the LDLR gene, a very, very rare metabolic disorder—occurring in 1 in a million births.
“Basically, his body over-produces and under-eliminates cholesterol,” explains Marla Tipping, his mom. High cholesterol can lead to narrowing of the arteries and blocking the blood flow to the heart, causing heart problems.
A family predisposition to high cholesterol and heart disease spurred Marla to have both of her sons’ cholesterol levels tested when they were toddlers. Will, Cam’s older brother, had a cholesterol level of 50. Cam’s was 500.
Since toddlers aren’t routinely tested for cholesterol, the doctor wasn’t too worried. He told them to have Cam tested again in a year. Within that time, he developed xanthoma—cholesterol deposits—on his elbows. Looking back, Marla says the xanthoma was the only indication that something was wrong, but at the time she assumed it was a harmless patch of warts. When Cam was tested again at age 3, his LDL levels were 850, and shortly after that they spiked to 1200 (an LDL cholesterol number of 190 is considered very high).
Marla and her husband Bill made an appointment at the University of Minnesota, where pediatric cardiologist Dr. Julia Steinberger diagnosed him. At the age of 3, he already had dangerous narrowing of the coronary arteries.
Cam was young enough not to understand the severity of his disorder. His parents, however, were reeling.“There’s no ‘fear’ word big enough when you get that kind of news about your child,” Marla says. “It’s a total eclipse. You can’t think of anything else.”
Because the disorder is so rare, Dr. Steinberger (“who is absolutely incredible,” Marla says) met up with Dr. Evan Stein of Cincinatti—one of the country’s leading authorities on the disorder—to discuss Cam’s situation. Together they put the diagnostic pieces in place and started an aggressive course of treatment.
Over the past 11 years, Cam has participated in numerous drug trials, but so far his body responds best to the LDL apheresis procedure, similar to dialysis in that it “cleans” the bad cholesterol from his blood. Every 14 days he heads over to Children’s Hospital for this. He is still regularly monitored by both Drs. Steinberger and Stein, and in recent years, has traveled to the National Institutes of Health in Maryland to take part in an observational study. At the NIH, specialists look at Cam’s knuckles, his ankles, his eyes, and carefully study him for any changes. “It gives us peace of mind,” Marla says.
Through the apherisis treatments and the drug trials and the blood checks and the dietary restrictions and the doctor’s appointments, Cam remains kind, considerate, and polite. He rarely ever complains about his situation. Instead of thinking “Why me?,” he has the mentality “It could always be worse.” That’s why even after Cam goes through his 2-4 hour apheresis procedure to clean his blood every two weeks, though tired and sometimes a little dizzy, he returns to school. He just wants to be treated like any other normal teenager—playing baseball, going to Twins games, hanging out with his buddies. He is reluctant to discuss his disorder because he doesn’t want sympathy. He doesn’t want it to define who he is.
Bill, Marla, Will and Cam share an incredibly strong bond; they know what it means to take care of each other. This experience has taught them a great deal about compassion and the unwavering commitment of healthcare providers. “We’d be in a good place if everyone in this country was provided with the quality of health care Cam has had,” Marla says. Part of this quality healthcare is due to the fact that Marla and Bill have been tireless advocates for their youngest son. “Do not be shy or feel ashamed about asking for what you need.” You know yourself (and your kids) better than anyone else does.
Marla’s advice to parents who have been blindsided by a child’s medical diagnosis is to rely on your friends and family to shore you up, support you, and carry you. Ask for help. Chances are, your friends and family want to ease your burden.
And no matter what, have a sense of humor. “Find something to laugh about every day,” she says. “In this household we laugh A LOT.”
Cam, 14, will be sharing his story at the Heart & Stroke Gala on Dec. 10, 2011, to support fundraising for more research to cure cholesterol disorders.