A letter from a proud Variety KC Mom!
“Our daughter, Lucy, is a smart, happy, and active toddler who happens to have spina bifida. While in utero, nerves in her spinal cord were damaged around the L5 vertebra. She also has bowel and bladder dysfunction. She works a little harder to meet gross motor milestones, but she is otherwise a pretty typical toddler. She started walking at 19 months and works hard weekly to meet other gross motor milestones.
Lucy was diagnosed in utero at 21 weeks with spina bifida-myelomenigocele. Her lesion is at the L5 vertebra to the S3 vertebra. This disability impacts her bowel and bladder function and her ability to walk at a typical age. We call her a twice born miracle. She was operated on at Children’s Mercy Hospital (the 5th ever at this hospital) in utero at 26 weeks to have her back closed. She was partially delivered by an amazing team of doctors and placed back in utero after having her surgery. She was born at 33 weeks and her back was totally healed. She spent 14 quick days in the NICU and has been doing well ever since. She has received physical therapy since birth. She sat at 6 months, crawled at 10 months, and walked at 19 months. She received weekly therapy and has always worked very hard to meet milestones. She has bowel and bladder dysfunction which is due to her condition. She was sick frequently in her first year of life and has frequent UTIs. She has been very healthy as of lately.
Having this equipment will give Lucy more opportunity to improve her gross motor skills and keep up with her sisters and family while we are being active as a family. She will be able to exercise while having fun and gaining strength. She will love having this equipment as she LOVES using it at therapy. Lucy is a happy and active child. She has a big smile, loves to be funny, likes to do whatever her older sisters are doing, and loves to imitate what she sees. She loves being active, loves to do everything herself “I walk,” “I do it,” she loves puppies, her soft blankets, loves her sisters, her parents, grandparents, and caregivers.”
Lucy’s family is making a simple request – much needed equipment that isn’t covered by insurance, but could help Lucy gain strength and get more enjoyment out of life. Variety donors get that! We step in when other resources aren’t available. Help us to help Lucy and every child like her. Shouldn’t every kid have the chance to Be Active, Be Social and Belong? Donate today varietykc.org/donate/
