When I heard Julie Matsushima discuss her new book, For the Love of Aimee, I was struck by her unwavering determination—not only to make a difference in her granddaughter’s life, but also to make a difference in the lives of all children with special needs. I’ve met many devoted grandmas since I became a grandma eight years ago, but Julie’s devotion to her granddaughter is truly exceptional.
On August 21, 1997 Julie’s identical twin granddaughters were born and her life changed dramatically. Chloe was a healthy, normal baby, but Aimee had massive brain damage and cerebral palsy. The doctors told the family that she probably wouldn’t live through the weekend and, if she did, she would not be able to see, hear, talk, or walk. The family was devastated.
Julie was the first one to enter the ICU to hold Aimee and as she did, she formed a bond with the infant. She also noticed that the baby seemed alert and startled when a nurse dropped a metal container on the floor. Something “magical” happened for Julie that first day and she made up her mind to do all she could to help Aimee achieve her maximum potential in life.
When Julie’s son and daughter-in-law brought their newborn twins home, Julie reaffirmed her personal commitment to become as involved as possible. After years of working 60 hours a week, she shifted her priorities to Aimee and took care of her everyday for an hour after work. She read everything she could find on cerebral palsy and connected with a parent who had organized a chat room and website devoted to children with cerebral palsy. Being part of that community helped her stay positive as she faced the doctors’ negative prognosis.
Throughout the book Julie credits Aimee’s spirit and determination with inspiring her to never give up. A breakthrough came after Aimee’s second birthday. The family learned about an innovative physical therapy program in Poland. The Euromed Rehabilitation Center, which had opened in 1994, placed children in an “Adeli suit” that corrected their posture and movements. After much research and fund-raising, (the entire cost of travel and therapy for one month was $12,000), Julie and her daughter-in-law took Aimee to the clinic in Poland. Their trip took 30 hours with many flight changes and they stayed for a month in a tiny room. During that trip Aimee began speaking in sentences and her personality blossomed. She benefited so much from therapy that Julie took her to Poland six more times over the next six years.
During one of their trips in 2001, Julie listened to other parents talking about the fund-raising challenges they faced in trying to bring their children to Poland for therapy. She was inspired to start That’s Amore Charitable Foundation, a non-profit organization that benefits children with disabilities by providing therapy and equipment.
Julie’s boundless energy and vibrant personality come across both in person and on every page of her book. Her love story touched me deeply and kept me turning the pages as she described the achievements and ordeals Aimee experienced. When a program based on the Euromed Rehabilitation Center opened in Anaheim, California, Julie continued to take Aimee for month-long treatments. On one trip Julie suffered a massive heart attack and had to have bypass surgery. But she regained her strength because of her determination to help Aimee.
Aimee is now 14 and about to start high school. She uses a wheelchair and attends special-needs classes. She is able to talk and write, and enjoys socializing. Physicians who have examined Aimee have always been impressed with her abilities. One neurologist told the family that if he had seen Aimee’s MRI prior to meeting her, he would never have believed it was the same child. He said he thought it was “pure love from her family, combined with support and encouragement, that was responsible for Aimee’s remarkable success.”
When Julie reflects on the years since Aimee’s birth, she says she never could have imagined the journey they would take together. “Through her I discovered the depth of my own character, the power of my love, the conviction of my faith, and my courage in the face of hopelessness and despair.”