“My dream is that this book will reach as many people who live with spastic diplegia as possible,” Ireland-based author Lily Collison says.

“I want people who have a disability to realize their potential and find education and support from the book. Despite COVID I will continue to work with Gillette Children's Healthcare Press to ensure this book reaches its intended audience,” Collison adds.

On March 4, 2020 Lily Collison and her family gathered at Gillette Children's headquarters in St. Paul, Minnesota with executives, providers, staff, patients and friends to launch her book, Spastic Diplegia—Bilateral Cerebral Palsy. It’s the first book in the newly launched Gillette Children’s Healthcare Press.

As we all know, a mere few days after that book launch the world as we once knew it changed due to the COVID-19 outbreak.

“It’s just really been a strange time for everyone,” Collison says. “Personally, I felt in a way I was sort of used to being ‘locked down’ because I spent two years writing the book and was looking forward to resuming what I thought would be a ‘normal life.’ So in a sense I felt like I was going from one form of lockdown to another.”

People who live with cerebral palsy and other physical challenges motivate Collison and help shape her attitude. “I regard launching the book during COVID-19 as just an extra challenge. People who live with spastic diplegia live with extra challenges throughout their lives. All I have to do is emulate them in learning how to overcome challenges,” she says.

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 in 1995. 

Collison researched he son’s condition and was eventually led to Gillette Children's and orthopedic surgeon James R. Gage, MD.

“We’ve been coming to Gillette for over 15 years and, Tommy’s had four procedures over the years. To me it was a ‘no brainer’ to work with Gillette on this book,” Collison says. “I was very happy 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.

Cerebral palsy is the most common cause of lifelong, childhood-onset physical disability in most countries, with an estimated 17 million diagnoses around the world. One-third of those who have CP have spastic diplegia.

“There are several resources about CP, but until now there wasn’t a comprehensive book about spastic diplegia accessible to a broader community. I hope it can serve as a resource for the millions who need to know more about their spastic diplegia,” Collison says.

Despite the challenges of restrictions due to COVID-19 Collison says she’s delighted with the response to her book. “Making the detailed medical information accessible to families was a big goal in writing the book. Families tell me they appreciate the solid information and many illustrations which help make the medical content clearer.”

“Something that’s really surprised me is that we’ve already been asked to translate the book into Spanish, Chinese and Vietnamese!”

Collison was recently asked to be a guest blogger on the Cerebral Palsy Network (CPRN) to share more of her expertise as a researcher and mother to a person who has spastic diplegia. “The first series of my posts was about Selective Dorsal Rhizotomy (SDR) in adulthood.”

It’s a topic she knows first-hand. Collison’s son, Tommy, underwent SDR surgery at Gillette in February 2020. It’s unusual for an adult to have SDR surgery because the procedure is usually performed when someone is 4 to 7 years of age. The surgery is complex and involves cutting the nerve rootlets in the spinal cord that are sending abnormal signals to the muscles. The aim of the procedure is to reduce spasticity, increase the energy efficiency of walking, improve range of motion and improve gait. Gillette is one of the top providers of SDR surgery in the United States.

Tommy Collison recalls the idea of SDR surgery was proposed during a visit with Gillette orthopedic surgeon, Tom Novacheck, MD, last October. “When Dr. Novacheck kind of pitched the surgery to me I listened because Gillette has such a good team and he’s such an expert,” Tommy says.

The SDR surgery went well and Tommy stayed at Gillette for several weeks of intensive therapy. He went back to work at his job in San Francisco four weeks after the completion of his therapy. Unfortunately, due to COVID-19, his office was closed two days after his return to work. He then began working remotely. It's now eight months post-surgery he continues working on rehabilitation and is seeing good improvement.

“There are 6 million people worldwide living with spastic diplegia. My dream is that this book will reach as many of those people as possible," Lily Collison says. "I have always thought that people who have a disability have to be ‘despite it’ people. Despite their disability they can realize their dreams. So ‘despite COVID,’ I will continue the work with Gillette Children’s Healthcare Press to realize the dream of the book reaching as many of those living with spastic diplegia as possible.

Gillette performs 81% of CP-related orthopedic surgeries in Minnesota and treats all forms of cerebral palsy—including the most severe. Gillette provides care to children from 41 states and 15 countries.

This video details more about the book and the resources Lily and Tommy Collison want to share with other families dealing with spastic diplegia.

To find out more about Spastic Diplegia—Bilateral Cerebral Palsy and Gillette Children’s Healthcare Press please visit:

https://gillettechildrenshealthcarepress.org/

To read Lily Collison’s guest blog posts on CPRN please visit:

https://cprn.org/