PHILADELPHIA (WTXF) High cholesterol is common in adults and frighteningly it's not all that rare in kids either.
A local doctor is on a tireless battle to get parents to have their children tested for it at a younger age before it becomes a silent killer.
It’s become a second home to the Watts family. Michelle, Jason, and 7-year-old Avery make the trip from Hagerstown, Maryland, to Wilmington, Delaware, every two weeks.
It's not a fun trip, it's a race to save a child's life. The child looks like a picture of health on the outside . "She had no symptoms." And she still none you can see but inside "She was already getting heart disease at the age of 6 and the cholesterol level's at the level of 800 . We know that's it's going to continue to get blocked."
The likely event? Heart attack or stroke.
"We didn't know it was familial hypercholesterolemia - we didn't even know what FH was."
It's a common genetic disorder -- leaving the body unable to clear cholesterol from the blood The abnormally high levels of LDL or bad cholesterol can start clogging arteries -from birth.
"it used to be thought it was one in 500 frequency, now it's about one in 200. It causes very early heart disease."
And Avery has the worst form of it. Turns out, both her parents happen to carry the gene and their cholesterol. At a young age - was very high - it's why they had their children's checked so young.
but to learn Avery's level...
"It was mind-blowing to me that that was even possible."
She gets a two- to - 3 hour blood cleansing treatment - similar to dialysis. The hooking up -- too heartbreaking to show... But getting a little easier now for the family to take.
"and just watching her cry and beg them not to do it and it was pretty horrible to watch sometimes and i think all 3 of us dreaded coming here."
now avery just gets comfy and keeps busy.
"she has a catheter that runs from her carotid artery to the port -- and then another that runs from her port to her heart."
"one of these tubes removes the blood to the machine, it runs thru the filters,, and the cholesterol is deposited, and then it puts the clean blood back in her body thru the other tube."
Avery is one of only 2 patients Dr. Gidding is treating this way.
For decades he's been among the doctors and organizations like the f-h foundation - pushing for younger cholesterol testing , younger treatment - to save lives.
"in the u.s., less than one percent of affected individuals know they have it."
and may never have one symptom.
"with the high cholesterol, the first you may ever have is a heart attack or sudden death."
the current guidelines - if early heart attack runs in your family or high cholesterol above 250 *before treatment - test your child over 2 years old.
dr gidding wants *all children tested between ages 9 and 11.
"you can tell by vascular imaging that about age 8 to 10 their vessels start to look different."
"(maybe we had some young people who had heart attacks and die and nobody ever knew what from?) Sure.
'" yeah, what we're missing is picking up these people very early in life."
"(what's it like?) It's not that fun. (no?)
but she tough's it out 'til the best part.
"i get to go home."
another 10 - 15 days her cholesterol back up to 450.
why her parents are pushing for research for better treatment, testing and awareness.
"people have to know about it."
"we have a long way to go."