'This is the book I wished I'd been handed when I received Tommy's diagnosis' - Lily Collison
When son Tommy was diagnosed with Cerebral Palsy in 1995, a consultant told mum-of-three Lily Collison to 'go home and focus on her other children'. She ignored his advice and has written a new book dubbed a 'sat nav' for parents, CP sufferers and doctors alike
It took until he was around one-year-old for Lily Collison to first hear the term 'cerebral palsy' in relation to her third son, Tommy.
Lily had enjoyed a normal pregnancy and birth and she and husband Denis were looking forward to happy times ahead with their new baby boy and older sons, Patrick and John, then aged six and four.
However, just over one year later, Tommy was diagnosed with Spastic Diplegia - a form of Cerebral Palsy.
After a subsequent scan, a consultant cruelly remarked to Lily: "Significant brain damage, not much active brain… go home and mind your other children."
"His words will be etched on my brain forever," says Lily.
Etched they may be, but Lily had no intention of doing any such thing, even though the family had known something was wrong with their baby boy, right from the start.
Immediately after he was born, little Tommy cried non-stop for three months, his legs were strong and stiff and he had trouble feeding.
But Lily was told that everything was fine, and accepted that.
Then suddenly the crying stopped and Tommy became a placid, serene, happy baby.
However, over the next few months, Lily noticed that he wasn't reaching normal developmental milestones such as sitting up without support and holding his bottle.
When doctors labelled him 'developmentally delayed' she arranged to see a paediatrician, who immediately diagnosed cerebral palsy (CP).
"When he said cerebral palsy, I didn't even know what it was," says Lily. "I'd heard of the condition, but had no idea what it actually meant, or how it affected a child.
"Even though you know that something's not right, being told that your child has serious, lifelong condition is a devastating moment for any parent.
"It doesn't matter what the diagnosis is be it CP, autism, spina bifida, cystic fibrosis or any other condition.
"Your life changes in that moment - meanwhile outside, the world continues to spin. We still had three children that needed meals. Work and school had to go on.
"You go into a kind of grieving," she adds. "It's a lonely place because your friends continue in the world you left yesterday and suddenly you have less in common with them."
However, unlike the cruel words that were to follow from a subsequent doctor, the paediatrician told her: "If I want to know how this child will turn out, I look at the mother."
Although taken aback, Lily soon came to realise that he was right, and for Tommy - in his childhood years at least - how he 'turned out' and how well he would overcome any obstacles due to his disability, was pretty much down to his parents.
Lily recalls: "When Tommy then went for a brain scan and a doctor told me to, "Go home and mind your other children". I thought, 'Wow!' I'm holding this one-year-old who is a very alert, very engaging child. How can they say that?"
"My child was certainly very behind physically, but I couldn't reconcile those words with the bright little boy in my arms.
"I saw no difference cognitively between Tommy and his older brothers, so, I 'parked' his words somewhere in my mind and resolved to set about learning everything I could about CP and spastic diplegia and how I could best help him."
Unfortunately, 25 years ago there was precious little information available to parents about CP and its variants, such as spastic diplegia.
"It was frustrating - those were the days before the internet and social media," says Lily.
"When Tommy was five, our community physio, gave me a brilliant book written for orthopaedic surgeons about the condition.
"The author, Dr Gage, worked the Gillette Children's Speciality Healthcare hospital in Minnesota - a world-renowned centre of excellence for CP treatment.
"As the book was written by surgeons for surgeons, although I have a science background, I had to read it with a medical dictionary by my side," she laughs.
"I couldn't understand half of it, but I was able to read about spastic diplegia and in the book, Dr Gage wrote that the 'classic' diplegic child has normal intelligence - it was the first positive statement about intelligence and spastic diplegia that I had read or heard."
And so, Lily began a journey of researching information, medical treatment and physical therapies and anything that could help Tommy - a journey that 25 years later, has resulted in the amazing book - Spastic Diplegia Bilateral Cerebral Palsy - written for parents, CP sufferers and medical professionals alike.
"I was thinking of all the 'other Tommys' when I began writing the book," says Lily.
"There is still so little information out there about this specific form of CP that I wanted to put together everything I had learned, along with the medical information, into a one-stop resource that ordinary people (not just doctors) could understand.
"The book is primarily for families, to help them understand the condition and achieve the best outcome for their child. The aim of the book is also to help people with spastic diplegia achieve their full potential.
"While the book explains the condition and its treatment, it also contains our personal story and stories of other families.
"What I hope I've done is explain spastic diplegia over the lifespan of the person affected.
"It's a lifelong condition - there's no cure - but good management (by healthcare experts, families and the affected person) can make all the difference.
"This is the book I wished I'd been handed when I received Tommy's diagnosis."
In writing the book, Lily was assisted by the medical professionals who have treated Tommy over the years, and as such, the publication has been hailed as a must-read for families and doctors alike.
She is so passionate about the aim of the book that ALL proceeds will go to CP research.
Throughout his life, Tommy has undergone numerous treatments and surgeries - many operations were carried out at the Gillette hospital in America. The first when he was 10 years old, lasted six hours and involved 13 procedures - nine on his right leg and four on his left. His most recent surgery was at the beginning of 2020.
Tommy, now 26, remembers his mum's hunt for information when he was growing up.
"Everywhere we went, mum would scour the medical section of bookshops looking for anything on CP and spastic diplegia," he recalls.
"A lot of the tables and diagrams in the book started out as bits of paper stuck to the fridge or notebook pages on the kitchen table."
The results of Lily's determination to do the best and get the best and right treatment for her child is clearly evident when you look at Tommy's achievements.
Despite requiring speech therapy at an early age, when he was 13, Tommy won the Best Overall Communicator Award for best explanation/discussion of a project in conversation with judges at the BT Young Scientist Exhibition.
Recalls Lily: "Tommy's project was on Cerebral Palsy in Mainstream Education. This was the kid who had delayed speech and he had just won a prize for verbal communication. I was so proud."
After graduating from New York University with an honours degree in journalism, Tommy now lives and works as a teacher in San Francisco, where his big brothers Patrick and John (founders of online payments company, Stripe) also reside.
Tommy has written the epilogue to his mum's book in which he praises his parents and acknowledges the huge part their determination has played in helping him succeed in life.
In one paragraph he writes: 'You beat your disability by knowing where you want to be - be that on crutches, or walking independently - and then working your ass off to get there.
'You beat it by never settling for less than what you can achieve. You might have a disability, but don't let that disability have you.'
Spastic Diplegia Bilateral Cerebral Palsy, by Lily Collison, is available on Amazon and e-book platforms. All proceeds go to Cerebral Palsy research
WHAT IS SPASTIC DIPLEGIA?
Cerebral Palsy (CP) is the most common physical disability in childhood. In NI, approximately 60 children are diagnosed each year.
CP is a term used to cover several neurological conditions.
Spastic Diplegia is one form of Cerebral Palsy.
About a third of those with CP, have spastic diplegia.
CP is caused by brain damage - during pregnancy, or birth, or up to age three. The brain damage affects the development of the child's movement and posture and may have other effects.
Spastic diplegia mostly affects the legs, walking and sometimes speech, but there is largely no cognitive impairment.
The effects of the brain damage (on muscle growth and then on bones and joints) develop slowly over time as the child grows.
