Hemophilia Walk unites those affected by blood disorder

Sunday, October 13, 2013 | 7:09 p.m. CDT
India Johnston, 12, holds cousin Donocan Seiling, 3, at Columbia's first Hemophilia Walk on Sunday at Stephens Lake Park. Johnston has Von Willebrand disease, which is related to hemophilia and is genetic.

COLUMBIA — The music was turned down, and everyone turned their eyes toward Kristin Marema as her tearful speech gave voice to the passion behind the first Hemophilia Walk in Columbia.

For Marema, like many of the others at Sunday's walk, the event strikes a personal chord.

Marema's 5-year-old son, Trenton, her father and her uncle all have hemophilia. The walk, sponsored by the Midwest Hemophilia Association, raised money for people in mid-Missouri with hemophilia and testified to the experiences that people with hemophilia and their loved ones share.

"When I got pregnant, I knew I was a carrier and knew there was a 50-50 chance that if I had a boy then he would have hemophilia," Marema said.

Marema, who coordinated Sunday's walk, said her family is lucky that Trenton's case is mild, but there are some families that have to infuse their children with a substance to help their blood clot three times a week. Hemophilia is a blood-clotting disorder that often causes prolonged bleeding and can, in many cases, make everyday injuries deadly.

"Trenton has been very healthy. We’ve been very blessed, so I think that’s why I try to volunteer so much to help these other moms," Marema said. "A lot of (parents) quit their jobs because they can’t find a day care who will take their child, or they can’t afford to be taking off work every time they fall and hit their head."

One of the mothers at the walk, Jeannette Quick, has to infuse her 5-year-old son, Liam, three times per week through a port in his chest. It took some time and training from the family's Walgreens home-health nurse to learn, Quick said.

"Hemophilia has basically changed our lives — it’s something that we deal with every day now," Quick said. "Now we are able to manage it at home to where he can live seemingly like other kids his age."

The family adopted Liam, and they have had him since the day he got home from the hospital, but it wasn't until he was a couple of weeks old that they found out about his disorder, Quick said.

When his umbilical cord stump fell off, the flesh wouldn't stop bleeding. That was when doctors began to do some checking into what was really going on, Quick said.

"We do not have this bleeding disorder in our family, but it’s brought us together as a family just because it’s a big deal," Quick said. "I think it’s made us stronger."

Even though he is so young, Liam knows he has a port, and knows that it makes him special, Quick said.

"We just keep telling him, 'This is what we are going to do to keep you safe,'" Quick said. "We don’t focus on all of the 'can'ts.' We try to really focus on the things we can do."

Quick said she doesn't know where they would be right now if it wasn't for April Littrell, the home-health nurse who helped make the Quick family more self-sufficient in caring for Liam. Littrell was one of 20 people who walked in support of Liam on Sunday.

Altogether more than 120 people, all friends and family members of those with hemophilia, joined the walk Sunday. This group raised more than $2,300. All the money raised helps fund a summer camp for children living with hemophilia.

And every child at the event got something special out of it, too. At the end of the walk, they each received a medal — except for little Trenton.

"Mom, where's my medal?" Trenton asked his mom.

Marema looked down. She was wearing it for him.

Supervising editor is Edward Hart.

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