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Why This Extra Lifer is Motivated to Play Games for 24 Hours

A fourth-year Extra Lifer, Lora Williams shares her motivation for why she plays games and raises funds for KU Medical Center through Extra Life.

“I’ve been doing Extra Life for four years and at the core of why I do it is my mom.

My mom is 61 and is the smartest and strongest person I know. She loves to garden, travel, and read. She loves a good mystery and is always wanting to know more about the history of everything. My mom was born in the 50s with a birth defect called clubfoot in both of her feet. That means all the tendons, muscles, and bones weren’t where they belonged when she was born.

Throughout her childhood, she underwent countless surgeries, wore braces, and missed a ton of school. Surgery then wasn’t what it is now, and although my mom can walk, it’s not without much struggle and pain. When I was a young kid, you could hardly tell my mom had any problems at all. Then in the course of a year or two everything shifted and my mom became quite sick. Sick beyond just her birth defect. Sick to the point she had to quite work and go on full-time disability.

For a few years, the doctors thought she had lupus. But if House taught us anything: it’s never lupus. Instead, she was diagnosed with a rare condition called Porphyria cutanea tarda. Porphyria causes sun sensitivity which creates sores on her skin as well as sickles her blood cells. Needless to say, she gets sick and tired when out in the sun for too long. She also developed chronic joint and bone problems and has had both of her hips replaced in the last 10 years.

The amount of pain my mother is in during her daily life is an amount I cannot imagine. It’s amazing she even gets out of bed. She takes pain meds that would probably kill some people. Thankfully, her doctors believe her and give her the medicine she needs to make life bearable. And with the help of canes and walkers, she gets around where she wants. From middle school until now I’ve been a primary caregiver for my mother. I helped make dinner, get things around the house, take her to appointments, and more. However, my mother has attended almost every performance of mine and even comes to my shows in adulthood.

She’s been the best mother and my only parent for all my life. I’m not sure how much of her daily life now would be improved with better care in hospitals as a kid, but judging from what I know of people my age with clubbed foot, surgery has improved greatly. Lots of things have improved greatly and that has a lot to do with Children’s Miracle Network Hospitals.

But it’s not just the children in the hospitals that CMN Hospitals impacts: it’s also the families. I’ve had just as much fun meeting the siblings of Miracle Kids as I have the Miracle Kids themselves. The Miracle Kids get a lot of attention, but CMN Hospitals makes sure no one is forgotten. It’s the little things like that that keep me doing Extra Life.

They don’t forget about the family dynamic. As a child caregiver, this means a lot to me. I saw both ways you could live your life: through my eyes as a healthy child and through the eyes of a caregiver to someone who has never been healthy. Every year, I meet more and more people CMN Hospitals impacts and I find more and more reasons to keep doing it.

Not only does it change lives for those in the hospital, but it changes the lives of those who do Extra Life. It has changed my life. It allows me to give back doing things I enjoy and remind myself of the important things in the world. Like health. And family. And sometimes, fun! Extra Life has also given me a huge community. It feels like home. All thanks to the person my mom has made me today. ”

To date, Lora has raised over $8,300 towards her fundraising goal of $10,000.  All funds stay local to benefit KU Medical Center and help provide patient programs, treatment, equipment and more to help local kids.