Next month, Beacon Children’s Hospital will celebrate five years of delivering expert care, close to home in its current location.
So we are shining a spotlight on some of inspiring patients, like Katie Joy Blye.
During a quick break in Katie Joy Blye’s recent physical therapy session, her mother, Jenni Blye, asks her what she wants to be when she grows up.
A “fashionista,” or clothing designer, “in Disney World,” the 8-year-old replies.
Would she design outfits for Minnie Mouse?
Katie Joy quickly nods, then turns around to focus on her work with physical therapist Lori Pelletier. During this particular session at Memorial Children’s Therapy Center, a part of Beacon Children’s Hospital, Pelletier, with the help of Katie Joy’s older sister Ada, 11, are coaching her to climb various obstacles and find slips of paper imprinted with fun clues.
Katie Joy seems to have already mastered the activity, marking yet another challenge that she has met and conquered in her journey toward mobility and independence.
There will be other challenges. There already have been so many. But this is a little girl who does not give up. She is hard-working, focused and remarkably determined.
Katie Joy has been demonstrating these traits since she was born at Memorial Hospital in 2013 with spina bifida, a condition in which the spinal cord does not form properly before birth.
“It hit me very hard that our child could die,” Jenni remembers about the emotional conversations she and husband, Jeff, had with doctors before her daughter’s birth. “We had to decide in that moment how we were going to be as people. One second to decide who we were going to be and we decided that God is good whether a child lives or dies. We knew it was going to be OK no matter what.”
It hasn’t always been easy. But the rewards outweigh any challenge that comes their way.
“In the last five years we’ve had some rollercoasters but through it all her attitude has always been, ‘I’m fine, I’m great, let’s do this,’” Jenni said. “We’ve noticed a little girl go from, ‘I can do this,’ to ‘I am doing this.’”
The couple learned early on that Katie Joy might never walk. “And now, look at her. She doesn’t want to stop until she’s too tired to walk any more,” Jenni said. With every step her daughter takes with the help of a walker, there’s a smile ear-to-ear on both their faces.
In fact, Katie Joy has learned to navigate the family’s Mishawaka home on her own. She is learning how to put weight on her feet. She does household chores, such as dusting and keeping her room clean, and she’s getting more involved in the kitchen and learning to cook.
“This might sound silly, but the more she can do independently, the better,” Jenni said. “Our goal as parents is to give her the freedom to get as close to being able to live on her own as possible if she chooses to do so.”
Katie Joy also has grown considerably beyond the home. At her weekly Bible class, she has overcome some social apprehension to form real friendships with other kids. Her mom loves this. What mom wouldn’t?
“She used to be painfully shy and wouldn’t hardly look at people talking to her,” Jenni said. “Now she takes a minute but then is a complete chatterbox. Being a friend to others and having friends has been an amazing process to watch.”
Katie Joy loves pretending to be a mermaid as she swims in her grandmother’s lake and her aunt’s pool, activities that seemed so unlikely when she was born. Last summer she learned to climb up onto her grandmother’s boat and jump off into the water on her own.
Obstacles don’t discourage this little girl. Case in point, she has learned to ride a tricycle. “When she was born we couldn’t imagine what her abilities would be. Being able to pedal and ride her tricycle around the neighborhood has been a really exciting start to the Spring this year,” Jenni said. “She has taught us to enjoy life, the big and small victories. There is something good in every day.”
Jenni was so impressed with Katie Joy’s care that she left her job as a teacher and librarian to become a unit assistant in Pediatrics at Beacon Children’s Hospital. The couple also have peace of mind knowing that pediatric neurosurgeon Daniel Fulkerson, MD, one of only four board-certified pediatric neurosurgeons in Indiana, and the only one not in Indianapolis, is close to home in the case of an emergency.
While Jenni credits the hospital staff for Katie Joy exceeding expectations, Pelletier said the entire Blye family has also been instrumental in their daughter’s success. “For as much as Katie and her parents say about what Beacon has done for her, Katie has given back even more,” Pelletier said. “She is such a joy to be around and an inspiration to all.”
Jenni cannot imagine her world without her daughters, without Katie Joy. “Our life has a different and new and fresh perspective because of her,” she said. “There is purpose for everything that we do and there is purpose for Katie Joy.”