Lili

11 years old & 6th grader

Lili started coming to Lucille Packard Stanford Children’s Hospital when was 4 years old. She was suffering with pain and loss of feeling and function in the lower half of her body. It took almost 2 years at different hospitals and talking with countless doctors before a Neurosurgeon at Stanford Childrens figured out what was wrong with Lili. She has Spina Bifida Occulta, a closed and thus, hidden, form of the defect. Because of this, her spinal chord was tethered, which means it was attached to her bones. As she grew, the spinal chord was stretched and her symptoms started to get worse. She is seen in about 9 different departments, has had spine and stomach surgeries and more procedures than we can count. Lili is an incredibly strong and resilient girl. She has an unbelievably happy attitude and bounces back from all of her medical problems in a way that amazes us every time.

Although she never wants to be at the hospital, she admits the new hospital is pretty amazing, with its playground/garden and forever young zones. Child Life has really helped her through some difficult times, and there are countless nurses and doctors who went the extra mile to make her feel safe and happier when she has to be in the hospital. 

Despite her leg weakness only a year or two ago, she recently made completion team gymnastics and club volleyball. She also is a strong skier and loves to sing and perform in theater shows. She is determined and motivated and hasn't let her medical history or current issues hold her back or deter her from trying anything. 

 We all feel so blessed to have Stanford Childrens in our backyard! It is a truly amazing hospital!

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Lili just got a new puppy, a bernedoodle named Gus. She loves to hang out with her friends, Starbucks and fashion!