Family fights genetic killer together
The last six months have been a whirlwind for Crystal and Jeremy Kennedy. The Maple newlyweds have faced a medical monster head-on and, to date, won.
“His health battle has made me love him so much more,” Crystal said. “I see this strength in him and it makes me so proud to be his wife.”
Jeremy, known for his big heart, also has a lot of fight in him, she said.
“To watch him struggle for his life, to watch his daughter struggle for her life,” Crystal said, has affected the entire family.
Saturday, they are inviting everyone to share some laughs, spaghetti and American talent during a 3 p.m. benefit at the Log Cabin Tavern on County Highway E. In addition to raising money to help the family with expenses, the event is aimed at raising awareness of the disease the family confronts daily.
“We can’t keep the situation in the dark anymore,” Crystal said.
Both Jeremy’s grandmother and aunt lost their fight with hereditary hemorrahagic telangiectasia (HHT). The possibility of dying from the genetic blood vessel disorder, said his aunt Pam Rabideaux of Lake Nebagamon, has always been very real to the family.
It’s been a busy few months for the Kennedys. They got married in June, blending into a family of seven. The next month Jeremy and his children, 8-year-old Presley and 6-year-old Gage, were tested for the disease. All three had it. Through emergency room visits, surgeries and scans, they have faced it together.
“Jeremy and Crystal are a good match,” said Neil Day, who works with Jeremy at Rob’s Custom Cabinetry in Superior. “Interpreting things is right up her alley. It’s very good she’s his other half.”
“He’s a wonderful family man,” Day said. “He’s great with children; he’s the glue.”
Someone with HHT tends to form blood vessels that lack normal capillaries between an artery and vein. That means high-pressure blood from an artery flows directly into a vein, creating a fragile spot that can rupture and bleed. If the abnormality surfaces in a larger blood vessel, it’s called an arteriovenous malformation (AVM). If the spots are in the brain or lungs, they are especially dangerous. An AVM on Jeremy’s lung led to a stroke in November. He had one surgery in Duluth, and later that month, a second at the Mayo Clinic in Rochester, Minn. to tackle a site doctors called “the monster.”
Meanwhile, a number of AVMs were found in Presley’s brain. Three weeks ago, the 8-year-old had surgery to treat them so they won’t burst.
“She’s very brave,” Crystal said. “She bounced back and wanted to go sledding the next day.”
Jeremy is also back to work part-time.
“We’re all eager to have him back here full-time,” Day said.
The crew at Rob’s has been extremely supportive, giving Jeremy the time he needs for medical procedures. They are also donating prizes for Saturday’s raffle, including an autographed Dan Marino jersey and Minnesota Twins tickets. One of the employees is even dusting off his Ozzy Osbourne outfit. Randy Hanson made it to the Vegas leg of “America’s Got Talent” in 2008, with Sharon Osbourne herself half-convinced it was her husband on stage.
“He actually works with us now,” Day said, so they asked if he would don the costume and belt out a few tunes.
The event is also a chance for the family that has been traveling to and from the Mayo constantly since November to take a breath.
“This is the first time he, I and the kids are going to be surrounded by all our friends and family without stress for the last three months,” Crystal said.
“It’s going to be a great time no matter what,” Day said.
Gage and Presley are good-hearted children who care about others. He likes Legos, riding his bike and playing in the mud. She loves going to the movies, singing, dance class and “Monster High” dolls. They also enjoy ice fishing with the entire family.
“They just want to love everybody, play with everybody, accept everybody,” Crystal said. And their father, Day said, has a heart for others, always willing to lend a hand. Everyone is encouraged to swing by the benefit “to show Jeremy there are people out there who care,” Crystal said.
Along with music, raffles and a spaghetti dinner, T-shirts and bracelets will be sold and pamphlets on HHT will be available.
Symptoms of the disease, which is also called Osler-Weber-Rendu Syndrome, can include recurring nosebleeds and small red to purplish spots on the hands, face or mouth. Other common symptoms include shortness of breath, fatigue, migraine headaches and leg swelling. For more information on the disease, go to the website at hht.org.