It took until he was around one years old for Lily to first hear the term “cerebral palsy” in relation to her third son, Tommy.
He had already missed a number of developmental milestones.
She sought the opinion of a paediatrician known to be a straight talker. On the day of the appointment she collected her two older sons from school.
She promised a visit to McDonald’s next door once the appointment was over.
After he examined Tommy the doctor asked Lily if she knew what was wrong with her child.
She remembers thinking that if she did she would not be consulting him. But she politely answered “No”.
It was not what she expected or what she wanted to hear, although you could argue that it was better news than what she had heard after Tommy, a short while earlier, had a CT scan.
Phrases she remembered then included: “significant brain damage” “go home and mind the other children”.
Lily felt a strange sense of relief after all the uncertainty and to this day appreciated that paediatrician’s “straight-talking manner”.
"Afterwards, the boys got their promised trip to McDonald’s with “one dazed mother”.
Well over a quarter of a century later there can be no doubt but that Lily took on board what that doctor said.
If you met her son, Tommy, now in his mid-twenties, what you would see is a fine young man, in a promising career, who looks to be living the dream in San Francisco.
As it happens Lily’s three fine sons are resident in that city and Tommy catches up regularly with his older brothers, Patrick (32), and John (30).
They are better known as the Collison brothers, founders of the multi-billion euro internet payment business Stripe.
In the recentthe worth of Patrick and John was estimated at €7.75 billion, putting them among the world’s youngest billionaires.
You only have to be in the company of Lily Collison a short while to realise these boys did not lick it off the ground. She is clearly immensely proud of her three sons.
However, you sense she’d rather stick pins in her eyes that be seen to be boasting in any way about wealth.
If anything she seems at pains to stress the ordinariness of their lives at home — speaking of how they only recently got rid of a 00 volvo which “used to stop in the middle of the road”.
I didn’t meet her husband, Denis, but this woman is an absolute powerhouse. It’s all the more impressive that she is now immersed in helping other people, when you imagine she could, if she wished, be whiling away her time on a tropical island.
Even on brief acquaintance though you cannot imagine a less likely scenario for this woman.
This week she launched a book specifically for parents like her who have a child diagnosed with Tommy’s condition. It’s also for those with the condition and for health professionals.
The title is a bit of a mouthful:. There was no such book accessible to laypeople when Tommy was a child.
While Tommy availed of the services of Central Remedial Clinic, he was also surgically treated for many years at the Gillette Children’s Specialty Healthcare in St Paul, Minnesota.
The book came about with the help of the medical professionals at the hospital.
I assisted with the book’s virtual launch this week, which is how I met Lily.
I asked her about the incredibly high level of achievement that runs through the entire family.
Her response was that she and her husband believed in focusing on health and education with regard to their children, and that the boys got great schooling.
Also involved in the online launch was Dr Tom Novachek, Associate Medical Director at Gillette and Tommy’s surgeon. He spoke of the Collison “grit”.
Tommy, talking from the East Coast of the US, spoke of how, as children, if they asked a question, their parents would stop and take the time to answer it properly, and in a way that they understood.
Lily, who at one point completed a research masters to better understand a particular treatment for Tommy’s condition, had been told early on that her son would likely need a wheelchair in college.
As it turned out he began to walk independently at three. He walks with limitations. One of his surgeries in the US hospital, when he was 10 years old, lasted six hours and involved 13 procedures — nine on his right leg and four on his left.
Another surgery when he was 18 clashed with his parent's 25th wedding anniversary. They had planned a cycling trip through France.
The three Collison boys, the older two now living in the US, insisted the trip go ahead and that the older boys would accompany Tommy to surgery. “I was totally outnumbered by the men in my life,” recalls Lily.
Tommy, as his mother writes, had delayed language development. But roll forward to age 13 though, when he won a Best Overall Communicator award at the BT Young Scientist Exhibition for a project on the issues faced by children with Cerebral Palsy in mainstream education.
He attended New York University and graduated with honours in journalism.
The book features a favourite photo from Tommy’s graduation, taken by Lily. The three Collison boys, a family friend, and their dad are walking to dinner that evening.
"I sent a copy of that photograph, with great gratitude, to the many professionals who had treated him over the years.”
That graduation also has a particular sweetness for Tommy on the sibling rivalry front. He laughingly told of how, unlike him, his two older brothers never did graduate from college.
Towards the end of the book there is a letter Tommy wrote to himself at 18, a “sort of what-I-wish-I’d known letter to the Tommy of a decade ago”.
One of the reasons Lily wrote this book is the concern she has for others with Tommy’s condition, who don’t reach their potential in life, don’t find employment or happy relationships.
She wrote that one of the duties as a parent is to help your child discover their passions by allowing them to try different things. Then support them in what they choose to pursue.
“The sky’s the limit. I also think the child with spastic displegia has to be a “despite it” kid — they have to know that despite their spastic displegia, they will succeed ... I have always felt that the greatest gift you can give any child is the gift of self-confidence.”