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Stories of NF: Kemper

By June 9, 2023December 4th, 2023Awareness, NF1, Story of NF

Kemper started out being behind in walking and his left foot turning out like he was walking on his ankles. He didn't start walking until he was 19 months (January 2020) with the help of physical therapy. Initially, it was thought that he was just small, flexible, and just needed to gain strength. His foot became normal, and he started walking, everything seemed fine until about mid 2021 when we noticed issues with his left leg. It seemed he was having issues with picking it up while walking and running, falling a lot, as if he was having to almost drag his leg, and that it seemed smaller compared to the right leg. Our appointment was first set with an orthopedic doctor until he started to complain about pain then we were sent to a neurologist. In January, there was a virtual appointment with the neurologist, and an MRI referral was made. MRI was set for June 1, 2022. On June 2, 2022, it was confirmed that he had a very large tumor on his lower spine (L4), tangled up in his spinal cord and moving into his pelvic area. On June 17, 2022, Kemper had the 4-and-a-half-hour surgery to attempt to remove the tumor. Only 60% was able to be removed. In October of 2022, genetic testing confirmed NF1. He is the only family member with NF1.

The 4-and-a-half-hour surgery and recovering was a defining moment for Kemper. He had to lay on his back for 24 hours before he could even attempt to sit up. He had to eat and drink lying on his back. Once the 24 hours passed, we had to get him up walking ASAP. He couldn't walk unless he had assistance for four days.

It has impacted his normal life. We now have annual MRI scans that need to be done, and living with the unknown if more will show up on next scan. His leg still has issues, it is still smaller and weaker. Sports will be a struggle. He has a high chance of living with back pain/issues the older and bigger he gets for the rest of his life.

Still, running around outside, fishing, swimming, and jumping on the trampoline makes Kemper happy. He enjoys coloring and learning at school. He loves his nighttime routine of bath, books, and cartoons before he goes to bed.

Favorite Song
Cover Me in Sunshine by Pink

Dream Superpower
To be fast and strong

Favorite Food
Spaghetti, chicken nuggets, and chocolate

Fun Fact
He hates pizza