Father, two kids battling genetic blood vessel disorder

By KBJR News 1

January 8, 2014 Updated Jan 8, 2014 at 11:30 PM CDT

Maple, WI (NNCNOW.com)--- Jeremy Kennedy knows all to well the pain a disease can cause a family.

He and his two kids have been diagnosed with a genetic blood vessel disorder, and now they are raising awareness of the disease and how it has impacted their family.

They say the first six months is supposed be the honeymoon stage..but for Crystal and Jeremy Kennedy, it has been anything but. Last July, just one month into their marriage,Jeremy's two children , 8-year-old Presley and 5-year-old Gage, tested positive for H-H-T, a genetic disorder that leads to abnormal blood vessel formation.

"They both have these AVM's. Initially they said Gage had them in his lungs and Presley had them in her lungs and in her brain," said Crystal Kennedy, step-mother to Presley and Gage.

An A-V-M is an arteriovenous malformation which causes an abnormal tangle of veins and arteries. This was just the beginning of their health scares... Crystal's husband Jeremy began having neck pain and numbness in his chest.

"Went to the emergency room and that's when I found out that I had five of them in my lungs," said Jeremy

Kennedy was sent to a hospital in Duluth to have some of the A-V-M's immediately surgically taken care of. He returned to work, but showed signs of a stroke and underwent surgery at the mayo Clinic to fix the A-V-M closest to the main artery that runs to his heart. Meanwhile, in December 8-year old Presley underwent radiation surgery to destroy the two A-V-M's found in her brain.

"They treated all those and hopefully right now all the tissue is dying around them, so they don't ever burst," said Jeremy.

As for 5-year-old Gage, doctors delivered good news that it might not be an A-V-M after all, but the family is remaining cautiously optimistic.

"He will have to be scanned every year just like the rest of us to see if it grows, if is one, or if there is more that develop overtime," said Jeremy

Kennedy credits his wife Crystal for holding the family together through all the trials and tribulations. A hard working mother, raising a family of five and going to school to be a lawyer who put everything on hold for her family and their health, and says she would go through it all again.

"If we can help other people, then this was all worth every bit of this, every anger, every tear, everything," said Crystal.

The family is holding a benefit to help cover future medical expenses. It will be at the Log Cabin Bar just outside of Superior on Saturday, January 11 at 3 p.m.

Written and posted to the web by Raeanna Marnati