ABOUT | LILY COLLISON

I live in Ireland with my husband and we have three adult sons. I have a science background with a degree in medical microbiology. I worked in industry (Abbott Laboratories and Analog Devices) and in education (lecturing full-time in quality management). I then found a company to provide customized training programs for large and small organizations.

I retired early and now pursue my interests with passion–traveling, reading, running, cycling, food, health and fitness, and spending time with family and friends. My husband and I go on adventures–be they cycling trips with just what we carry on our bikes (e.g., a six week cycle from the west coast of France to Budapest) or driving trips around Europe in our camper. We also spend time with family in the US.

Cerebral palsy (CP) advocacy is also a big interest of mine. Cerebral palsy first came into our lives when our youngest son, Tommy, was one. His diagnosis began a long journey from then to today, where he is now aged 26, living independently and working in San Francisco, as do his two 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 read extensively to learn about the condition. To further my learning, I completed a master’s degree by research–a case study investigating outcome following multilevel orthopedic surgery when Tommy was nine. Over the years, I’ve sat on national and international committees and contributed to conferences and research proposals on the subject of CP.

My own journey of learning about CP 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–research shows that others lack information. A survey of over a thousand parents and caregivers of children with CP carried out by the US organization CP Now found they judged available medical information to be inadequate to guide their decision-making. A Dutch study found that the greatest area of unmet need reported by young adults with CP was information about their condition. 

Spastic diplegia is one of six main subtypes of CP, all of which differ in levels of severity, prognosis, and management plans. Spastic diplegia is also one of the most common CP subtypes, affecting an estimated six million people worldwide. Good books on CP exist, but they tend to cover all subtypes together. It’s like a book treating all cancers as one. If I have throat cancer, I only want to learn about throat cancer. If I have spastic diplegia, I only want to learn about spastic diplegia.

Since a book on spastic diplegia did not exist when Tommy was diagnosed and still did not exist today, I wrote one 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. All proceeds from the book are going to CP research.

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!

 

 

 

 

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