Going Her Own Way: Evie is Defying the Odds
- Author: Evie D
Evie was diagnosed with spina bifida, hydrocephalus, and Chiari-II malformation in utero. Her family was told that she would probably not develop like other kids.
"Our team of doctors was very black and white. We were told she would be behind her peers in speech and language development due to her hydrocephalus and that she would struggle to walk. She would never jump, never dance," said Evie's mom, Allasondra.
Without support from physical, and occupational therapists and her family, Evie's doctors may have been right. But through years of treatment and dedication, Evie has beat the odds and exceeded all expectations, playing with her older brother, dancing, swimming, playing softball, and creating all kinds of art! She has even learned to ride a bike with her therapist, Janine! Her parents and physical therapists are ready to support her as she grows and develops.
Evie is now starting her third year of dance classes, having done tap, jazz, and ballet. She will be trying out hip-hop this year. Evie's doctors said she was unlikely to walk independently, but she played softball with the Moosic Redwings this year!
Evie sometimes struggles with long distances as her legs tire more easily. Her family bought her an adaptive stroller, and she also wears DAFO ankle braces, allowing her ankles to flex while providing stability. Evie can now take breaks from her DAFO's, thanks to the strength and balance she has built through physical therapy!
She also developed language skills just as any other child, "She didn't have a first word, she had a first phrase: 'Hi, dad, what's up?'"
Even though Evie is thriving, her diagnoses have greatly impacted her and her family's lives.
"I think that, just like any other family or individual facing a life-changing diagnosis, we needed to adapt to a new life path set before us when Evie was born. We were entrusted with a beautiful baby girl and knew we would do anything within our power to protect her. But many things were out of our control," said Allasondra, "We needed to trust the professionals to see her through the nine different surgeries in a three-year period. It definitely took a mental toll on us."
Evie with physical therapist, Janine Kane.
No matter what, Evie was always going to keep marching on. She can, with the help of her team of Allied Services therapists and her family's support. She never planned on letting her differences interfere with her life. She started school not long ago, and though Allasondra was nervous, Evie is doing great!
"I knew what to look out for if I suspected a shunt malfunction or illness. I knew what typical movement looked like for her and was nervous about how others would perceive her differences. But our experiences have been nothing short of miraculous. She is thriving with a support plan in place and a team that has her back."
Evie is preparing to tackle second grade now, and her mother offered some advice to other parents:
"Don't assume. That anyone else would have any idea how your child is affected and what supports they will need. Spell it out. A D V O C A T E. And don't be afraid to be the squeaky wheel."
