The "Go-to" Grandma - Grandma Advocates for Special Needs Children

November 2011

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  • When Julie Matsushima learned that she was going to become a grandma of identical twin girls, she was ecstatic. But her joy turned to sorrow when one of the twins, Aimee, was born with massive brain damage and cerebral palsy. Doctors predicted Aimee wouldn't live and if she did, she would be blind, deaf and unable to speak 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 in 1997, and she made up her mind to do all she could to help Aimee achieve her maximum potential in life.

  • She read everything she could find on cerebral palsy and connected with a parent who had organized a Web site devoted to children with cerebral palsy. Being part of that community helped her stay positive as she faced the doctors’ negative prognosis.

  • A breakthrough came after Aimee’s second birthday. The family learned about an innovative physical therapy program in Poland. The Euromed Rehabilitation Center, started 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 brought Aimee to the clinic in Poland.

  • Their trip took 30 hours with many flight changes. 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 the therapy that Julie took her to Poland six more times over the next six years.

  • When a program based on the Euromed Rehabilitation Center opened in Anaheim, California, Julie continued to take Aimee for month-long treatments. During 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 by 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.”

  • Julie has chronicled their miraculous 14-year journey in her book For the Love of Aimee. 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 is viewed as a lay expert on the subject and is frequently invited to share her inspiring story with parents, professionals and doctors. She has not only made a difference in her granddaughter”s life, but has also become a devoted advocate for children with special needs. She has raised awareness about the need for adaptive and equal play equipment in our parks by serving as a Parks Commissioner for the City of San Jose Parks, Recreation and Neighborhood Services Department and on the Advisory Board of the Office of Therapeutic Services for the City of San Jose.

  • by Donne Davis
    • Donne Davis and her husband live in Menlo Park. They have two grown children and two grandchildren. Six years ago, after witnessing the birth of her first grandchild, Donne founded the GaGa Sisterhood, a social network for enthusiastic grandmas. Read her blog at http://gagasisterhood.com/ or email her at: donnedavis@gagasisterhood.com.