Lily was born at just 31 weeks, along with her twin Harper. Shortly after birth, Lily contracted E.coli meningoencephalitis which led to static encephalopathy resulting in cerebral palsy, microcephaly, periventricular leukomalacia, cortical visual impairment, optic nerve atrophy, and global developmental delays.
Even with all her challenges, Lily can talk and laugh and hug her family. She loves to do everything her twin sister does and her family’s greatest joy comes in seeing her achieve milestones that Harper met, even though it may be a year or more later.
Lily is currently having success at sitting up independently, but is unable to stand or walk independently. She is mobile when using her KidWalk. She’s been receiving botox injects three times a year to help her with the cerebral palsy and this has resulted in a stronger core – allowing her to do so much more! Lily is considered legally blind because of the CVI and ONA, but she wears glasses and they are hopeful that she does see some things, just aren’t sure how much or what she is seeing. Most recently Lily has been diagnosed with hip dysplasia in her right hip due to her CP.
Lily currently has a Radio Flyer tricycle that she is able to sit in and ride while a parent pushes her. She is unable to keep her feet on the pedals or rotate the pedals, and it is hard to get her on and off the tricycle due to her cerebral palsy (her legs/feet get caught). She’s also growing out of it, and when she and her twin turn four at the end of March we would like to give them each a bike for their birthday. Their brother Boston got a bike when he was four and it’s a family milestone. Unfortunately a bike for Lily is very expensive. When Harper learns to ride a bike it’s only natural that Lily wants to be out there, riding along and feeling that same exhilaration of success. Their neighborhood has a good group of kids who like to play outside and if Lily had an adaptive bike, she could join in the mix and interact with her friends.
Variety KC believes every kid should Be Active, Be Social, and Belong – and that includes pedaling along on their very own bike! Lily is getting her bike thanks to generous Variety KC donors – won’t you help other kids like Lily to have a bike of their own? Please donate today at varietykc.org/donate/
