An Incredible Journey with Easterseals

“1-2-3: GO!” is a chant often heard in three-year-old Journey’s house as she and her six-year-old brother race around the house in their ride-on cars. For some parents, this may sound peculiar, but for Journey’s parents, Patrice and Rich, they are witnessing a bonding moment between siblings. 

When Journey was born at 28 weeks, they knew they had a journey ahead of them - the inspiration for her name. It was not until Journey was nine months old and had a seizure that they realized their journey would not be the one they expected. When Journey was diagnosed with a rare brain disorder, her parents were concerned about the unknown, but then they found Easterseals, a team of therapists, and the GoBabyGo! program and knew they were not alone.  

“It was terrifying at the beginning, but once we had a diagnosis, we hit the ground running to find ways to help her and make her life easier,” Patrice says. “You can tell the therapists love what they d,o and it shows in the way they care about the people they work with. They are a part of our family. They help Journey be the best she can be. They help make big goals and help her reach them.” 

When Journey started receiving therapy services at 11 months, she was working on better head control, sitting up, making more sounds, swallowing, and grasping items. When Journey was two, Easterseals therapists incorporated a modified, ride-on car into her therapy goals. Originally developed with Cole Galloway, an engineer from the University of Delaware, the “GoBabyGo!” cars are used in Easterseals therapy sessions and on loan to families to encourage mobility and independence. In Journey’s situation, it forged an irreplaceable bond with her brother.  

“I broke down crying when I first saw the GoBabyGo! car. They thought of everything and modified it just for her,” Patrice says. “Journey loved it! The fact that her brother had one, too, made it even better. So, they raced around the house together! It put her on the same level as her brother. She was a big girl doing it all on her own. It completely changed the dynamics of our kids. Every time she is on the same level as her brother, she comes alive!”

Journey is now three and has passed numerous milestones with the help of speech, physical, and occupational therapies. She is now working on sitting up on her own for longer periods of time, crawling, and walking with a walker, which helps her keep up with her brother.

“We celebrate what she can do. Concentrate on your child and what makes them better. Easterseals therapists help get Journey excited about what she can do,” Patrice says. “It was so wonderful to have people who understand and can point us in the right direction. Easterseals is in our corner.”

“The doctors told us Journey will probably never walk, move, smile, or laugh; but with Easterseals, she’s just meeting goal after goal,” Rich says. “Now, I feel like the sky’s the limit, because they’ve laid a foundation for us. Maybe one day she’ll be walking across the stage getting a diploma. That’s my hope.”