Josephine, also known as Josie, is an adorable and spunky 2-year-old little girl. She loves her big brother, enjoys dancing and painting, and loves broccoli with alfredo sauce. Her parents describe her as being wild and free, and at any given point throughout the day you will hear her singing at the top of her lungs.
Josephine was born with a condition called lipomyelomeningocele spina bifida. This birth defect caused a fatty tumor to grow in her lower spine, tethering her spinal cord, which then caused the development of a syrinx (much like a very large cyst).
When Josie was 9 months old, she had surgery that detethered her spine and removed some of the tumor. However, due to the risky location of the tumor and the presence of nerves, doctors could not remove the entire mass.
Josie’s syrinx adds special hurdles and needs for caution. It stretches nearly the entire length of her spine, running right through the cord itself. If she has a bad fall or trauma, it could swell and act like a spinal cord injury, causing paralysis.
The tumor in her spine and lower back will continue to grow her entire life. This will require routine imaging to carefully monitor its growth and help balance the risks of surgical intervention.
Currently, Josie is enrolled in physical therapy and utilizes the expertise of her spina bifida medical team to keep her as strong and healthy as possible.
If one didn’t know these medical challenges about Josie, one would see that she is mostly a very happy child and ready to live each day to the fullest. She certainly does not let her medical hurdles rob her joy.
Josie will be adopted as a Sparrow to Hidden Valley High School. HVHS students will work hard to earn money for Josie through sponsored community service.
