Arie was born with Congenital CMV (Cytomegalovirus) which resulted in the most severe type of Cerebral Palsy, Spastic Quad CP. When Arie was still in the womb the doctors noticed some irregularities with her brain on the ultrasounds but they were unable to determine the cause of the issue. Once she was born Arie underwent a CT Scan that determined that she had mild to severe brain damage. One doctor even told us that she would be a “vegetable”.
During the first 3 years of Arie’s life, we spent 50+ nights at the hospital treating multiple challenges and illnesses that were brought on by her compromised immune system resulting from CMV. She does not sit independently, walk or talk despite her strong desire to do all three. We are Arie’s arms, legs, and voice at all times. As her parents, we regularly need to take the place of her arms that don’t work the way she wants them to, her legs that can’t take her where she wants to go and her voice that isn’t able to let people hear what she wants to say. Her brother has developed an interesting habit of explaining to people what he believes Arie would like to say. He has decided on his own that at times he must speak for his sister, so he pitches his voice higher at those points and says “I want to play with my tea set now” or whatever he believes she wants or needs from an able-bodied person in the room.
Despite these challenges, Arie has proven to be a very smart, loving and funny little girl. She lights up the room when she enters and “runs the classroom” according to her teachers. She spends roughly 10 hours a week doing intense Occupational Therapy, Physical Therapy, and Speech Therapy, not to mention the regular doctor’s appointments. Between a normal week of school, therapy, the alternative feeding and medical routines it can be very difficult to find the energy and time to play with her siblings or friends or be a “typical” little girl.
Arie lights up when she sees Little Mermaid, Elsa, and Anna, Doc McStuffins, and Sofia the First. She loves the Chicago Cubs, especially Anthony Rizzo and Kris Bryant. During a recent family photo shoot, she did not want to smile until we all started singing Go Cubs Go and she started moving to the music and smiling.
Arie absolutely loves the outdoors. She enjoys our family walks while Austin, her big brother, rides his bike along the Katy Trail or in the neighborhood. Arie consistently points to his bike, as though she is asking to have a turn. An adaptive bike for Arie would not only bring her freedom, but it would bring her the feeling of inclusion.
While Arie is coming to an age where she is constantly looking for independence the financial challenges of an adapted bike for Arie seem almost insurmountable. Without the assistance of a foundation like Arya the cost of an adapted bike will take much longer to save up for.