ABOUT | LILY COLLISON

Lily Collison - Profile PhotoI live in Ireland with my husband and we have three adult sons. I have a science background with a degree in medical microbiology, and I worked in industry (Abbott Laboratories) and in education (lecturing full-time on quality management) before founding a company to provide customized training programs for large and small organizations. In 2015 I retired and now pursue my many interests: traveling, reading, running, cycling, health and fitness, food, and spending time with family and friends. The term “cerebral palsy” (CP) first came into our lives when our youngest son, Tommy, was about one year old. His diagnosis began a long journey that continues today–with Tommy living and working as an independent adult in San Francisco, as do his brothers.

The form of CP that Tommy has is spastic diplegia, also termed “bilateral CP.” In the early days, I struggled to understand the condition and that affected my confidence in helping him. I’ve always been passionate about education, so I set out to read extensively to learn about the condition, and I later completed a master’s degree investigating outcome after orthopedic surgery in CP. Over the years, I’ve also sat on national and international committees and contributed to conferences and research proposals on the subject of CP.

My own journey of learning reminds me of the Irish expression fiche blain ag fás, which means “twenty years a-growing.” You could say I’ve had over twenty years growing my knowledge about this condition.

I knew I was not alone in having difficulty understanding spastic diplegia, one of six main subtypes of CP, all of which differ in levels of severity, prognosis, and management plans. Good books on CP exist, but they tend to cover all subtypes together making information about spastic diplegia difficult to access. It was like visiting a foreign country without the right guidebook. Imagine visiting India with a guidebook to all of Asia. Now imagine that the guidebook has the information you need about India, but it’s not in one place in the book. Interspersed is information about all the other countries, when all you really need—and want—is an “India only” guidebook. That’s what I needed to understand Tommy’s condition—the “spastic diplegia only” guidebook.

Since a book on spastic diplegia only did not exist, I was determined to write one, which I did in conjunction with senior medical staff at Gillette Children’s Specialty Healthcare. The result is Spastic Diplegia—Bilateral Cerebral Palsy. My hope is that its existence will help other families searching for that much-needed information, all in one place.

But once a book is published, that is not the end of the story. Letting people know of its existence is the next challenge. Anything you can do to help us spread the word is greatly appreciated–for example purchasing the book, sharing this link … Thank you in advance!