TeamNEGU Blog

Courageous Kid Spotlight: Kylie

June 8, 2022

6-year-old Kylie was diagnosed this year with Rhabdomyosarcoma, a rare type of cancer that forms in soft tissue — specifically skeletal muscle tissue or sometimes hollow organs such as the bladder or uterus.

Sharing how Kylie’s journey started, her dad, Sean said, We noticed Kylie limping in early January. After a couple weeks of watching her limp slowly get worse, we started taking her to different places to get her checked out (pediatrician, orthopedic, physical therapy, chiropractor). We eventually circled back to the pediatrician for a more thorough exam where they noticed one of her lungs wasn’t functioning properly. This led us to Children’s in Pittsburgh. After arriving at Children’s, Kylie underwent several procedures that ultimately led to her being diagnosed with stage 4 Rhabdomyosarcoma. Since diagnosis, Kylie has completed 13 weeks of chemotherapy (out of 42) and she started radiation therapy on June 6th (for 7 weeks).”

In exciting news, Kylie’s updated scans just a few weeks ago showed that her tumor and the major spots throughout her body were gone! Her family is so thrilled at the news and the incredible progress Kylie has made since diagnosis. And so are we!

Kylie loves unicorns & rainbows, princesses, and making slime. She also enjoys crafting with her mom and playing video games with her dad. Her favorite colors are purple, pink, and blue, and she wants to be a Youtuber when she grows up!

Sean shared about his amazing daughter, “She is the most positive person that I know. She continues to smile every day. She sees the good in everything and we are so proud of how she is handling herself through treatment. We are thankful for NEGU and the Jessie Rees Foundation because they show that we are not alone in Kylie’s fight against Rhabdomyosarcoma. The support from our local community and beyond has been incredible and we appreciate all the support that we have received.”

Kylie also receives a ton of encouragement and support from her amazing SuperSibs, Quinn, age 4, and Cameron, who is 1. Sean tells us that Quinn really looks up to Kylie and is so great at supporting her when she’s not feeling well. Cameron loves watching videos with his big sis on her iPad when he’s not busy chasing Kylie around the house. We can’t imagine how much laughter, silliness, and love fills that house!

We are so honored to encourage Kylie and Courageous Kids fighting cancer every day through ClubNEGU. This free program is for all Courageous Kids, their SuperSibs and parents. Each ClubNEGU family receives fun doses of hope, joy and love each month!

We NEGU for Kylie!