Katie is a fiery redhead, has a smile that lights up a room and she always has a crayon in her hand. She’ll draw on whatever and whomever is around her!
“Katie is creative, inventive, sassy and hilarious. Despite everything she goes through, she still has a full heart and a wicked sense of humor,” says Jenna, Katie’s mom.
At age two, Katie was diagnosed with Maroteaux-Lamy syndrome. MPS VI is a rare genetic disorder characterized by the inability to make a specific enzyme. She experiences heart abnormalities, hip dysplasia, vision issues, a compromised airway and an overall learning deficit.
“When she got diagnosed, I went home and started looking into it and the reality of it set in,” Jenna said. “MPS takes on a new life of its own. It never ends. It’s catastrophic. It doesn’t take a holiday.”
Weekly Hospital Visits
Katie undergoes five hours of infusion every week at her local hospital. She takes a drug called Naglazyme that is administered into her bloodstream. There’s no Child Life program, so Katie and her parents find ways to keep themselves entertained. Jenna brings stacks of books, her husband orders Domino’s Pizza and brings it into the infusion room and Katie brings bags and bags of dolls and crayons.
“She draws on anything and everyone!” Jenna says laughing. “If she gets close enough, she’s drawn pictures on her nurse’s outfits.”
Starlight Fun Center Provides a Much-Needed Distraction
The family also visits Seattle Children’s Hospital four hours away every few months for more complex procedures and to meet with specialists. There is a Starlight Fun Center in the waiting room and Jenna says it makes a world of a difference.
“Giving kids a distraction makes everything better in the long run. It can keep the kids occupied and it allows the parents to breathe a sigh of relief,” Jenna says.
Katie loves videogames and her and her father enjoy setting up the Fun Center together. Jenna says having a fun distraction, like the Fun Center, means the difference of whether Katie behaves through a test or sits through a procedure.
“I’ve been in hospitals that don’t have anything. Then I’ve been in hospitals that have something for the children, whether it be the Fun Center or child life specialists,” Jenna says. “Any kind of resource is better than no resource. I’ve seen the difference that is made through that.”
Mom Advice: Believe in your Child
In between hospital visits, Katie attends sixth grade, and just like any 12-year-old, she doesn’t like school very much.
Even though Katie’s physical disability of curved hands and slightly bent legs hinders her from participating in many childhood activities, Jenna always tries to focus on the positives.
“We always highlight what she can do, rather than things she can’t. Kids dealing with physical issues need to believe they can do anything. That confidence can do a lot of good, because if they begin to doubt themselves, then the disease wins,” Jenna says.
Just because you’re sick, doesn’t mean you stop being a kid, and it shouldn’t mean missing out on the fun of childhood. Donate today and provide moments of happiness and distraction through programs like the Starlight Fun Center. You can help bring smiles to kids like Katie.Donate Now