By Cassandra Fergunson
Mommy to Sofia
Dandy-walker Syndrome, Hydrocephalus, Epilepsy
Born October 2019
We found out that our second daughter, Sofia, had Dandy-walker Syndrome and Hydrocephalus at our 22-week ultrasound. It was a hard pill to swallow.
She was born having seizures. At 6 months old she had a trach surgically placed because her seizures and brain malformation simply made it hard for her to breath well.
Sofia’s conditions are not well known, so we work to help raise awareness when people ask. I wish more people would ask and work to understand her condition, rather than just stare at her when we’re in public. But we will always adapt the world to what she needs – we will not wait on the world to adapt to her.
Sofia just turned 5 years old. She goes to pre-k and is thriving.
We are so grateful that On Angels’ Wings has always come to us to do Sofia’s annual pictures, so we don’t have to worry about taking her places where she might be exposed to germs – a basic cold can be very scary for her. We’ve been able to get annual journey pictures and pictures with Santa in a safe environment.
On Angels’ Wings helps us to stay positive. They are great at making you feel comfortable and help families that feel scared about taking their complex kids into situations that most don’t understand. OAW accommodates as we need, and we love that.
