Cerebral Palsy

St. Louis Children’s Hospital

Ella's Story

Outgoing, and a hard worker, Ella loves school, the color pink and dancing. She’s the older sister to her younger brother, Jake, who is 5, and is full of personality. She’s known to everyone as caring, empathic and accepting of others. After all, she knows what it’s like to be a little bit different because she lives with cerebral palsy, a disorder that affects a person’s ability to move and maintain balance and posture.

Ella’s mom was 16 weeks into her pregnancy when doctors noticed Ella was a lot smaller than she should have been at that point, so her mom was put on bedrest. Doctors monitored Ella carefully and determined that she was continuing to struggle and needed medical intervention. Born at just 27 weeks, Ella was diagnosed with fetal growth restriction, a condition in which the unborn baby is not growing at a normal rate. When she was 2 weeks old, she suffered a brain bleed and was subsequently diagnosed with periventricular leukomalacia (PVL), a softening of brain tissue due to her brain bleed. PVL has no cure and affects the nerve cells that control motor movements and occurs most often in babies who are born before 30 weeks. She spent her first 4 months of life in the neonatal intensive care unit and when she finally came home from the hospital, she continued to receive therapy services to help her stay strong and thrive.

During Ella’s involvement with First Steps, Missouri’s early intervention program for infants and toddlers, her therapists recommended a visit with T.S. Park, MD, who specializes in treating children with cerebral palsy using selective dorsal rhizotomy (SDR) at St. Louis Children’s. After meeting with Dr. Park, who has completed more than 4,500 SDR surgeries, 2-year-old Ella was approved for SDR. Her surgery was a success and she stayed at St. Louis Children’s for six days. During her recovery from surgery, Ella still got to enjoy being a kid while inside the hospital walls with visits from therapy dogs and time in the playroom.

Dr. Park continued to monitor her progress while she continued to gain strength with her therapy sessions. Her care team decided that a second surgery would benefit Ella greatly and in June 2020, she had a hip adductor surgery to release tightness in the hip muscles.

Now 9 years old, Ella attends weekly therapy at school and after school and also participates in intensive sessions at St. Louis Children’s during the summer. She’s active in physical, speech and occupational therapies and weekly dance classes. She also participates each year in Tri My Best, an adaptive triathlon hosted by St. Louis Children’s and Washington University.

How CMN Funds Help Ella and Kids Like Her:

St. Louis Children’s Camp Independence was developed specifically for children with cerebral palsy and other movement disorders. Focusing on adaptive sports, this day camp provides confidence in their athletic abilities and has a lasting impact on the children who attend. Thanks to funds from CMN, Camp Independence and other specialty camps show Ella and her peers what they are truly capable of achieving.