“Part of my life’s mission is to get people diagnosed with cerebral palsy to read this book,” says Ila Eckhoff, Managing Director of BlackRock.
“Lily Collison’s book changed my life and it changed how I think things could be,” Eckhoff explains.
Spastic Diplegia—Bilateral Cerebral Palsy is written by Ireland-based author, Lily Collison, and was released by Gillette Children’s Healthcare Press just before the COVID-19 pandemic in March 2020.
The chief inspiration for Collison’s book was her own journey helping her now adult son, Tommy, find care after he was diagnosed with cerebral palsy (CP) in 1995. At that time, Collison researched her son’s condition and was eventually led to Gillette Children's Specialty Healthcare.
“We’ve been coming to Gillette for over 15 years and, Tommy’s had four procedures over the years,” Collison says. “I was proud to work in close collaboration with the medical experts at Gillette on this book and hope it can serve as a resource for the millions who need to know more about their spastic diplegia,” she adds.
Lily Collison’s idea was to write the book she and her family wished they had as they navigated her son’s health concerns. Ila Eckhoff, an adult living with cerebral palsy, feels the book hits this mark.
“After I read Lily’s book, it was the first time in my life that I could truly understand my CP and what my body has experienced,” Eckhoff says. “Her book is written as a parent, so it’s written with love. It’s the first book I’ve seen that talks about CP across the lifespan.”
Eckhoff grew up outside of New York City and was diagnosed with CP in the 1960s when she was 2. Doctors noted her “toe walking” and as a result, her childhood was filled with operations and many painful experiences. Eckhoff is thankful CP treatments have improved over the years as research and new treatment methods evolved.
“It really took me reading Lily’s book to realize the kind of CP I have is spastic diplegia,” Eckhoff says. “Reading her book, I felt like I was learning about myself for the first time. Everything makes more sense now.”
"It's not just you walking this path."
Christine Simpson, mother to 16-year-old Gillette patient, Aaron, agrees with Eckhoff’s assessment of Collison’s work.
“Lily’s book really breaks down what it’s like to have spastic diplegia,” Simpson says. “As Lily outlined her son Tommy’s case and I saw a lot of parallels with my son Aaron and what he was dealing with.”
Simpson says Spastic Diplegia—Bilateral Cerebral Palsy is a good resource for parents who have just had a child diagnosed with CP. “There’s a lot of good information but the best part of the book is the personal aspect. It has good medical and clinical information but it was good to hear her thoughts as a parent,” Simpson says. “After reading Lily’s book you really know it’s not just you walking this path.”
Simpson is a pilot with the U.S. Air Force and is currently serving in the Texas Air National Guard.
“Because of my job in the military I moved a lot and that made it challenging for my son to get consistent medical care,” Simpson recalls. “My son was born 10 weeks premature and was missing a lot of developmental milestones. He was getting physical therapy and occupational therapy but there were no real red flags. He was my first child. Eventually when he was 3 he was officially diagnosed with CP.”
Aaron’s diagnosis prompted Simpson to go into what she calls “research mode.” She saw Gillette pediatric orthopedic surgeon, Tom Novacheck, MD speak at a conference and thought, “This guy seems to know the most about CP and I should take Aaron to Gillette.”
In 2017 Simpson and her son came to Gillette and, after an extensive examination, including a gait and motion analysis at Gillette’s James R. Gage Center, Novacheck recommended Single-Event Multilevel Surgery (SEMLS) for Aaron. SEMLS is a procedure on the lower extremities like the hips, knees, ankles or feet. Multiple corrections are made in one orthopedic surgery. It can help treat conditions that make walking difficult.
“Ultimately the SEMLS and the care at Gillette was the best thing for Aaron,” Christine proclaims. “He’s a success and is getting ready to graduate from high school.”
"This book will help families in a multitude of ways."
Both Christine Simpson and Ila Eckhoff agree the fact that Lilly Collison is a mother who has extensively researched cerebral palsy and shared her personal story makes Spastic Diplegia—Bilateral Cerebral Palsy a remarkable book.
“I really admire Lily and her heart for Gillette,” Simpson says.
“This book will help families in a multitude of ways,” Eckhoff says. “It is user friendly, accessible and is full of motivational quotes. It really tells parents it’s okay to push your child a bit. If you want your child to be capable treat them like they are capable.”
Gillette president and CEO, Barbara Joers, says the entire organization remains excited about Collison’s book and Gillette Children’s Healthcare Press. “Lily’s book will help assist patients and caregivers,” Joers says. “Our press will focus on educating our community, improving understanding of complex, rare and traumatic medical conditions and advocating for the needs of the patients we serve at Gillette.”
To find out more about Spastic Diplegia—Bilateral Cerebral Palsy and Gillette Children’s Healthcare Press please visit:
It’s Cerebral Palsy Awareness Month. All March, we are honoring and recognizing those who have cerebral palsy. Visit http://gillette.mn/weseecp regularly for the latest in patient care and innovation.
NOTE: Some photos were taken before COVID-19 safety measures.