One evening last December, I heard Karlee’s siblings screaming for my help. I rushed to her room to find her shaking uncontrollably, drooling and making choking sounds, and looking terrified while staring into the distance. Within a few minutes, she stopped shaking, but was still unable to speak or see for several more minutes. We rushed her to the emergency room where after a long night, we were told that she had a “mass” in her brain.
Long story short, she was admitted to the hospital, underwent brain surgery, and awoke unable to move or feel anything on her left side. Although we were all extremely grateful that her surgery went well and a biopsy revealed that the tumor was low grade and required no chemotherapy or radiation, the hemiparalysis was devastating. She couldn’t move the left side of her face. She couldn’t move her left leg. She couldn’t move her left arm or hand. Our daughter could no longer sit, stand, or walk.
Once she was medically stable, Karlee was transferred to Nemours Children’s Hospital as an inpatient in their orthopedic rehab - where she would remain through the Christmas holidays and into the New Year. Thankfully, she was blessed with the best physicians and physical, occupational, and speech therapists who worked with her 5 days a week for over 5 weeks. This intensive therapy really helped her progress, and by the time she was discharged she could walk with the use of a leg brace and a cane and smile with both sides of her face. She was able to shrug her shoulder a bit and ever-so-slightly curl her fingers.
With continued outpatient therapy 3 days a week, Karlee can now walk with her brace and limited use of a cane and has slowly-progressing upper arm strength. However, she still has no sensation and very little movement in her left hand.
Karlee is a flute player. It’s her passion. She was the first chair flute in her high school orchestra class. She enjoyed being a member of one of the largest marching bands in the state of Florida. This girl played the flute while she walked around the house or backyard for over an hour each day. Karlee loved playing the flute so much, that she planned on majoring in music in college, joining an orchestra until she had a family, and then switch to teaching private flute lessons.
When she wasn’t playing the flute, Karlee was running around outside, shooting her bow and arrows, dancing around the living room, swimming, or collecting seashells and surfing at the beach. She taught herself to crochet and worked on every craft imaginable. She was unstoppable.
As you can imagine, this entire ordeal has been tough for our sweet Karlee. Although she strives to remain upbeat, work hard, and keep a positive attitude, the drastic and sudden physical changes in her life have taken quite the toll on her mental and emotional wellbeing. Even so, she's a shining example of someone who is prayerful and full of hope as she continues to focus on tiny victories.
We would love to give Karlee her life back – as much as we possibly can. She longs to play the flute again - for which she needs her hand and fingers to work. She has a strong desire to continue in the marching band and surf with her brothers - both of which she needs her ankle function to improve so she doesn’t need the brace anymore. There are medical devices that could help with her recovery, but they aren’t covered by insurance. We’ve even submitted claims - they’ve been repeatedly denied.
That’s where we need your help. Her therapists have recommended two devices. The one that will stimulate and strengthen Karlee’s hand and fingers is the Bioness H200. To improve her walking (correct the foot drop), she needs the WalkAide. She’s been evaluated for both of these devices and is a perfect candidate. The problem is, they are expensive. In addition, we're facing mounting medical expenses as well as gas/tolls driving to and from therapy an hour away 3 days a week for 5 months now.
Please help us help Karlee continue her journey of beating paralysis. Sometimes, Karlee wakes up in the morning, forgets she’s partially paralyzed, and then panics when she realizes that she is. One day, I hope and pray that she’ll never wake up like this again. She’ll wake up, roll out of bed, grab her flute, and walk out back to play to her heart’s content. With your help, I believe this dream of ours will become a reality.
Thank you so much for reading Karlee’s story. Any help you have to offer would be appreciated.
- Emily grajales
- Elizabeth Rominger
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