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When Lilly Collison’s third child was diagnosed with what turned out to be a form of cerebral palsy, the outlook must have looked incredibly bleak.
“A consultant told me that there was very little active brain, but I knew this was not true. He had a very committed and alert baby, he was just like his brothers, ”he says.
Those older boys, Patrick and John Collison, are today among the youngest self-made billionaires in the world. Their global online payments business, Stripe, is a testament to a combination of intellectual skills and personal drive that brought them from rural Tipperary to Silicon Valley as teenagers.
Tommy Collison also lives in San Francisco, where he works at Lambda College, an online software coding college.
If anything, living as a young freelancer thousands of miles from home is the most remarkable journey in what, by any measure, is an extraordinary family.
Tommy was diagnosed with spastic diplegia (bilateral cerebral palsy) shortly after his first birthday. The family was warned that he would not walk until he was seven years old, and that by college age he would likely be a wheelchair user.
Against all predictions, he was walking for three and now walks unaided (although he is temporarily on a crutch recovering from surgery). In San Francisco he leads a life like anyone in their twenties, even occasionally writing about technology for the Irish Independent.
Lilly has written a book about Tommy’s diagnosis and how he got to be where he is.
“When I first heard the words cerebral palsy, I didn’t even know what they meant. None of us is the perfect mother, there are many things that I regret, but I want to pass on everything we learned.”
She credits a book she herself received when Tommy was five years old by her community physical therapist at Nenagh, Carmel Murray. Among other things, Dr. James Gage’s book included confirmation that spastic diplegia generally does not involve cognitive impairment.
Crucially, it sparked a long-lasting relationship with Dr. Gage and his clinic, Gillette Children’s Specialty Healthcare in Minnesota, where Tommy went for treatment, including intensive rounds of surgery.
“When Tommy was nine, he underwent major orthopedic surgery on his hips, knees, and feet – 13 procedures in the same operation. I firmly believe that it was this surgery and more as a teenager that means that he can walk today.
“We had to leave Patrick and John at home with care for six weeks – it was very difficult and it broke the family unit,” she said.
“We were like any other family, we were very close, but it was not easy.
“Patrick and John were also very helpful. Denis and I joke that Tommy has four parents. “
His older brothers helped Tommy with his daily stretching and strengthening exercise regimen. It even sparked his business style.
“At one point, the three boys with their nanny, Clodagh, formed a fictitious ‘Treinando’ company. It would provide training courses ‘to improve the muscles of children’ ”.
The courses offered will be familiar to thousands of families where a child struggles with gross motor skills: balancing bridges, stretching, stair challenge, walking.
“The company had a copyrighted full-color brochure, all rights reserved, and a welcome to prospective clients from Dr. Tommy Collison,” he laughs.
Now, Lilly has written her own book, ‘Spastic Diplegia-Bilateral Cerebral Palsy’, aimed at parents facing the same diagnosis for their child.
“This is the book I would like to be given when I received Tommy’s diagnosis 25 years ago. All you want to know is what is relevant to your child’s type, which is why my book is a deep dive into spastic diplegia. I wanted it to be a kind of ‘what to expect when you are diagnosed, and offer a roadmap to adulthood’.
It’s serious work, prepared with the help of medical experts at Gillette Children’s Hospital, but it weaves together medical information with family history to provide an accessible guide to the condition, one of the six most common forms of cerebral palsy.
Although the book is aimed at parents, Lilly also has a tough message for the government. This country should provide the kind of home care that Collisons should seek in the US.
“Tommy grew up to reach his full potential, but research shows that not enough people with spastic diplegia can fully participate in life; there are higher rates of unemployment, not having a partner or children and this makes me very sad. You could have untreatable cancer in the morning and would have to accept it, but there are treatments for spastic diplegia, although not all are available in Ireland yet. I’m thinking of all the other Tommys out there. “
Your own favorite photo from your graduation from New York University three years ago proves the point. It’s a snapshot he took of the family walking to a restaurant to celebrate.
It is a very ordinary image. As the family walks through a park, Tommy walks around chatting with his father Denis, John comes forward texting, while Patrick listens intently.
For Lilly it is a powerful image of potential fulfilled and shared with the many professionals she credits with helping to achieve that day. It is obvious that her own determination is a big part of the story and she has overcome her usual shyness in the media to share what she has learned.
His advice to parents of a child with a disability is pragmatic and focuses on fostering independence. “We would give Tommy more time to do things like get dressed. An extra half hour for slow movements meant he could prepare himself, ”he says.
“I always tried to treat Tommy like his two brothers, even though he fell a lot more. Parents understandably want to protect their child with cerebral palsy from falls. But I felt like I needed to learn how to protect myself when falling, ”she says.
Parental nerves never really go away.
“I was very proud when Tommy had the confidence to go to New York to study journalism. I was worried that he would fall on the subway, as a father I needed to let him go, ”he says.
“Aim for the top of the range. It may or may not be possible to get there, but, as in any field of activity, the first step to success is to aim high, ”he says.
“We need orthopedic surgeons in Ireland who specialize in PC care. We have orthopedic surgeons who specialize in hip replacements and knee replacements. Orthopedic surgery in CP care is much more complex. “
“We need selective dorsal rhizotomy (SDR), a neurosurgery, that is available in Ireland as eligible children have to travel to the UK,” he says.
“We have the case numbers: approximately 150 children are diagnosed each year with cerebral palsy. Gillette Hospital serves Minnesota, which has the same population as Ireland. We have had a wonderful experience with healthcare professionals in our community and at the Central Remedial Clinic, but we need the full range of evidence-based best practice treatments available at Irel and. “
All proceeds from ‘Spastic Diplegia – Bilateral Cerebral Palsy’ go to CP research.
Available to order at bookstores and online. € 26 and the e-book € 5.
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