‘We parents are key influencers of outcome’

Lily Collison, formerly of Dromineer, has written a book about her son Tommy's life with cerebral palsy

Lily Collison, formerly of Dromineer, has written a book about her son Tommy's life with cerebral palsy.

She and Denis Collison used to run the old Sail Inn at Dromineer. Their sons went to primary school at the Gaelscoil in Nenagh before moving on to secondary school at Castletroy College in Limerick.

Sons Patrick and John went on to found online payments firm Stripe, making them billionaires. Like his brothers, Tommy lives in the US, working at the Lambda School in San Francisco, an online computer science and job training programme.

Lily's book - ‘Spastic Diplegia—Bilateral Cerebral Palsy’ is part-practical guide, part-memoir. It charts the lifespan of the condition and is aimed at families and professionals.

When Tommy was diagnosed, at the age of 1, with spastic diplegia (also known as bilateral cerebral palsy) in 1995, it started Lily's search for knowledge of the condition and how best to help her son. Her search for information over the years led her to realise that there was no book specifically on spastic diplegia, which is a subtype of cerebral palsy (CP) – therefore, she decided to write one. The result is ‘Spastic Diplegia—Bilateral Cerebral Palsy’.

Cerebral palsy is the most common cause of childhood-onset lifelong physical disability. Approximately one-third of those with CP – an estimated six million people worldwide – have the subtype spastic diplegia, which causes motor problems (affecting muscles, bones, and joints), which have an impact on walking. When Tommy was diagnosed, Lily didn’t even know what the term CP meant.

Part-practical guide, part-personal story, the book addresses how spastic diplegia develops from childhood to adulthood and explains the evidence-based, best-practice treatments. The book was written in collaboration with medical experts from Gillette Children’s Specialty Healthcare, which is a world-renowned centre of excellence in CP treatment in Minnesota, and where Tommy received treatment.

Lily, who has a primary degree in science from Trinity College Dublin and a Masters in science from University College Dublin, has held various positions in industry and education. She said: “After months of Tommy being labelled ‘developmentally delayed’ but with no diagnosis forthcoming, I decided to seek a second opinion from a pediatrician known to be a straight talker. After the usual brief pleasantries and examination, he diagnosed Tommy with cerebral palsy and said words to me that I will never forget – ‘If I want to know how this child will turn out, I don’t look at the child, I look at the mother’. That day, I had no opinion on the matter but all these years later, I agree that we parents are key influencers of outcome.”

She added: “I wrote the book because in the early years, my lack of understanding held me back in my ability and confidence in helping Tommy – I felt like I was trying to do a jigsaw puzzle without having the picture on the box for a reference.”

Keen to ensure her son had the opportunity to live his life to the fullest, Lily set about educating herself on spastic diplegia. She said: “I wanted to write the book I would have loved to have had when I received Tommy’s diagnosis back in 1995. ‘Spastic Diplegia—Bilateral Cerebral Palsy’ gives detailed medical information (with all sources cited) normally found in books for professionals but clearly explained so that it is accessible to the lay-reader.

"It also contains our personal experience and the experiences of other families, to make the detailed medical information more relatable. The book empowers parents of young children and adolescents and adults with the condition to become better advocates and co-decision-makers in the medical process.”

Though written for families, the book is also useful for healthcare professionals, educators, and students, as it provides a holistic view of spastic diplegia.

The Irish launch event for the book was hosted by the CRC, where Tommy also received treatment. CRC chief executive, Stephanie Manahan, said: “The CRC was delighted to host the launch event for this book. It is an excellent, much-needed book that will be valuable to people with spastic diplegia, their families, and healthcare workers alike.”

Tommy Collison said: “I am so proud of my mum for undertaking this book and presenting this information in a clear and simple manner. I have learned so much from it myself, that I have no doubt that it will also be of use to others with spastic diplegia.”

‘Spastic Diplegia—Bilateral Cerebral Palsy’ is published by Gillette Children’s Healthcare Press and is available to order from bookstores and to buy on Amazon. All proceeds from the book go to CP research.