Lillianna (Lilli) and the Shull family were our fifth Inspirational Family. Lilli is a beautiful, 4 year old with red hair and brown eyes. On May 12th, 2011, Lilli, her mom and her brother, Jack, welcomed her daddy home from a 9-month deployment with the Marine Corps. Lilli had changed so much in those 9 months. Her daddy was so happy to get to know his now walking & talking daughter! On May 30th, the family left their home in North Carolina to spend 3 weeks visiting all of their extended family in Michigan. Once they arrived in Michigan, Lilli seemed to be tired all the time and didn’t want to walk. When forced to stand on her own, her legs and arms would shake. Her mom called her pediatrician in NC who told them to take her to a pediatric ER immediately. After a long 12 hour day, a CT showed a large mass and fluid on the top of her brain. A MRI a few hours later showed a second mass in the back of her brain. Part of the tumor, the back portion, was resected on June 13th. Lilli was diagnosed with AT/RT, a rare, malignant, rapidly growing brain tumor.
Lilli has had no new tumor growth since November 2011! She still has a feeding tube and doesn't take any nutrients by mouth but has recently started feeding therapy to see if she will start eating again. She is still not speaking or walking but crawls all over and attends preschool in the mornings. She enjoys being around other kids and loves when they sing songs! She also continues to undergo physical, occupational, and speech therapies daily to assist in these delays she now has from the brain cancer and/or surgery.
Lillianna is the daughter to Mike and Jen Shull and younger sister to Jack.