Even now, almost 30 years on, Lily Collison vividly recalls her youngest son’s diagnosis.

It was one of the most common childhood physical disabilities, but Collison knew nothing about cerebral palsy (CP).

Now, the doctor was telling her that Tommy, her third son, had it. Like many people in similar situations, she had more questions than answers.

She had seen My Left Foot, of course. In 1990, five years before the doctor told her about Tommy, she had watched Brenda Fricker’s Oscar-winning portrayal of Bridget Brown, the mother of Christy Brown, the author and artist who had severe spastic cerebral palsy.

The movie, which highlighted Brown’s courage and talent, won widespread acclaim; its success was seen by historians as a turning point for Irish cinema.

Combined with the success of the Irish football team at the 1990 World Cup, it helped mark a newfound confidence in the country, a self-belief that helped create the foundations for Ireland’s economic rise.  

But little had changed for people with cerebral palsy. Lily Collison might have seen the film, but she knew little about the condition. Now she was facing it.

Collison had studied microbiology at Trinity College Dublin before working as a quality assurance manager with Abbott Laboratories. So, she did what scientists do – she started to pore over the science.

Collison read and researched, trying to find out what was the best thing she could do for her son Tommy. She was told he would walk late and, by the time he was in his late teens, he would probably be in a wheelchair. She was prepared to accept this, but that acceptance would only come if she determined that fate was inevitable.

The more Collison read, the more she learned.

*****

Cerebral palsy is a group of conditions that impacts movement and posture. It is caused by damage that occurs to the developing brain before, during, or after birth. Its impact on people varies, ranging from mild to severe. The type of cerebral palsy impacting Tommy Collison was spastic diplegia, a relatively common type.

But what could she help her son do about it?

The non-profit Gillette Children’s Hospital in St Paul, Minnesota was founded in 1897 by renowned surgeon Arthur Gillette and Jessie Haskins, a student who had curvature of the spine. Haskins helped Gillette convince Minnesota politicians to fund the first public hospital in the United States dedicated to children who had disabilities.

When Tommy Collison was five, his mother was given a book written by Dr James Gage, a renowned doctor based in Gillette Children’s Hospital. This book, published in 1991, described the best way to treat cerebral palsy and it led to her contacting Dr Gage and deciding to take her son for major surgery there.

Previously in the US, children with cerebral palsy were operated on most years, leading to a relentless round of surgeries and rehabilitations.

There was the pain of surgery. There was the time missed from the school. There was the long recovery period, there was the morale-sapping tension of knowing that every year would bring more. Every time one surgery was done, it impacted another part of the body.

James Gage believed that a better approach was to try and carry out as many surgeries as possible in one-go. The time to do this was before a child reached adolescence when they underwent a growth spurt.

In March 2004, Lily Collison and her husband Denis took Tommy for treatment in Minnesota.

Tommy Collison was under anaesthetic for six hours as two teams of surgeons worked simultaneously on him in an intense series of procedures.

“It was really correcting all his muscle and bone problems. It was doing all the corrections in one big operation with one period of rehabilitation,” Lily Collison said.

“He had 13 procedures in one operation, hips surgery, knee surgery, they literally break the femur so it turns in the right direction. They did it all together. It’s called single event multilevel surgery,” Collison said.

In Tommy Collison’s case, he needed the most help with his gait. “His walk was very energy inefficient. His walking was like climbing stairs all day every day. The surgery was to improve his walking both in terms of protecting his joints and also to improve the quality of his walking,” his mother said.

They paid for the surgeries themselves, as there was no way of doing it in Ireland. “It was about 20 years ago and very expensive,” Collison said. “But getting the right surgery at the right time is so important. The prediction for Tommy was that he’d be a wheelchair user by the time he was in college. I had no problem if he was a wheelchair user as long as that was his potential.” 

Afterwards there was intense rehabilitation, starting in the United States. At home in Ireland, his brothers helped him stretch and rebuild his strength, in a process that took about a year. Lily Collison said she believed it helped her other sons. “It gave them a greater understanding of disability and empathy,” she said.

“They have a good understanding of what good treatment looks like. They acted in loco parentis when Tommy, aged 18, had orthopaedic surgery in the US.

“As children, their first step into entrepreneurship was a fictional company, Treinando. It offered exercises for children to improve muscles. It had a detailed brochure and its own website,” she recalled. “They did it to make exercises easier and more fun for Tommy aged about three or four at the time.”

Revolutionising care in Ireland

It is 20 years since Lily Collison took her son to Minseotta for life-changing surgery. Now, as she sits in the boardroom of The Currency on a warm sunny day, she is positively beaming.

She is joined by Rachel Byrne, executive director of the Cerebral Palsy Foundation. (“Rachel always brings the good weather,” Collison laughs. “I don’t think she’s ever seen it rain here.”)

Collison and Byrne talk passionately about cerebral palsy in Ireland. It is shocking to hear how little Ireland has progressed in 20 years, yet exciting as they explain how fast things are moving now. It is a mission for them both.

Collison and Byrne are in Ireland for ten days, as part of their work leading a ‘programme of excellence’ to revolutionise the delivery of cerebral palsy care in Ireland.

The programme was launched just over a year ago with $12.5 million (€11.54 million) in philanthropic funding, including backing from John and Patrick Collison. Sons to Lily and Denis and brother to Tommy, the two brothers are the founders of one of the world’s most valuable private businesses, the online payment company Stripe. This is year one of the programme, and it will finish in 2029.

Byrne has worked with the Cerebral Palsy Foundation for almost a decade, and she’s been executive director for nearly five years. A qualified physical therapist from Australia, her interest in getting better outcomes for people with cerebral palsy was sparked by a family member.

Lily Collison did a Masters in UCD in 2006, completing her thesis with the title: “Single-Event Multi-Level Surgery in Spastic Diplegia: A Case Study.”

More than a decade later, she wrote a book called Spastic Diplegia–Bilateral Cerebral Palsy. It is a practical guide for families of children diagnosed with that type of CP, and has been published in multiple languages. All profits go to the Gillette Children’s Hospital.

She is working with Gillette Children’s Hospital on a series of nine books for families on childhood-onset (mostly) lifelong conditions, including cerebral palsy, scoliosis, craniosynostosis, epilepsy, spina bifida, and osteogenesis imperfecta. Five titles will be published this December, followed by four next year.

“I’ve been on the journey. I see the gaps, and I see ways of filling the gaps. That’s what keeps me doing it. I was pleasantly surprised at the reaction to the first book as families devoured it. It’s available in Chinese now. It’s available because people need it,” Collison said.

Byrne said the Foundation was supporting the books, in order to give parents the best information. “The most devastating part of things in Ireland is they can take the book to their doctor and say this is what my child should have, but they won’t get it. We want the system to change to match the literature and best practice,” according to Byrne.

Lily Collison could easily retire and live a very comfortable life. After all, two of her sons rank among the richest people in the world. But writing a book made her think about if she could do more.

About two years ago she was asked by Byrne to join the global board of the Cerebral Palsy Foundation, an organisation that punches far above its $5.5 million annual budget. “That’s direct funding, but we work with a lot of partners,” Byrne explained. “If you look at what influence we have, it is probably around $100 million a year.”

Collison was uncertain about whether she wanted to get involved but agreed to meet the foundation in New York. “I went along to my first meeting and I was so impressed,” she recalled.

“They are really trying to improve cerebral palsy care by bringing evidence-based best practice into the community. They were talking about working with the WHO and UNICEF in countries like Uganda, Bulgaria and Peru, and Rachel was saying we’re going to do more work abroad.”

Collison left the meeting energised: “I rang Rachel the next day, and I said ‘Ireland is abroad. Can we go to Ireland?’”

Collison was now in. She is working for the foundation globally but, as part of that, has helped develop a plan for Ireland. In May 2023, The Cerebral Palsy Foundation announced a $12.5 million five-year programme to change the trajectory of how people lived with the condition in Ireland.

“What we’re trying to do is revolutionise cerebral palsy care in Ireland,” she said, adding that the foundation is working with clinicians, researchers, and people with CP and their families on the plan, ‘Revolutionising Cerebral Palsy Care in Ireland’.

Engagement, progress, and systems failures

In Ireland, there are about 3,000 children and 9,500 adults with CP. This number is only an estimate as there is still no official register, although part of the $12.5 million is being spent remedying this.

Money is also being spent supporting a new advocacy group to give people with CP and their families a voice. The first of its kind in Ireland, it already has 150 members. “We’re growing,” Byrne said.

“That started this year. It is a phenomenal group of engaged parents and young adults with cerebral palsy.”

Byrne said they were frustrated by the system; unable to get the best outcomes for their children, Byrne said many were forced to travel abroad to find it.

There are now three clinical and research hubs and the goal is to make Ireland an international leader in cerebral palsy care and research.

Each has a different chair. In UCC, it is Professor Deirdre Murray. Dr Jennifer Ryan leads the project in RSCI, while in TCD, it is Professor Denise McDonald. “They are three very accomplished people who were already doing some research in cerebral palsy,” Byrne said. “But they didn’t have the pipeline. Now all three can focus. Every single day they wake up and think about cerebral palsy.”

Already, there is progress – Ireland’s biggest maternity hospitals have brought the average diagnosis time down to around nine months from two years. This means children can be helped earlier and supported across their lives, as early diagnosis is crucial for positive outcomes.

“The evidence has been around for 20 to 30 years that there is a better way to do things. It is not novel. This isn’t the frontier of science. This is how we should do it,” Byrne said. 

While many countries didn’t have the resources to give people the best care, Byrne said this was not the case in Ireland. Yet, she said she was “astonished” by how bad the Irish system was when she first examined it.

“Ireland has orthopaedic surgeons and physicians. It has some of the top universities in the world,” she said, adding: “All the components are there. It’s not a budgetary issue. It is not a talent issue. It is an operations issue.” 

Collison said what motivated her was thinking of all the parents now and in the future and their children who were not getting the treatment they deserved. “A parent wants to think that if there is something wrong with their child they can access the best care,” she said.

“I don’t want children in Ireland to be limited by postal code. I want them to be limited by medical science. When you see pockets of really great care around the world, why can’t we have them in Ireland? Irish people are very smart. There’s no reason we can’t have the evidence-based best practice care. It’s not available everywhere but it’s available in countries like Sweden, Australia, parts of the US, why not here?”

A mission to change the system

The Foundation’s initial five-year “programme of excellence” is to run between 2024 and 2029 and had a budget of €12.5 million. 

Six months after its launch, Byrne is already more ambitious for the project. The amount of money, she now believes, could be doubled with the Foundation working with a host of academic bodies and state agencies.    

“The initial $12.5 million investment over five years provides a strong foundation. But we are now thinking about additional funding, potentially bringing the total to $25 million. This will significantly enhance our capabilities,” according to Byrne.

Byrne said the additional funds would help increase its outcomes across various areas, including expanding its research scope, developing advanced infrastructure and technology, and attracting and developing top-tier talent. She added it would also strengthen collaborative initiatives, and increase community and industry engagement.

If the increased funding comes on stream, Byrne said all of the money would still be spent in the same five-year period. “An additional $5 million from Science Foundation Ireland, along with ongoing commitments from Trinity College, RCSI, and UCC, will allow us to broaden the scope and scale of our research projects,” she said.

Lily Collison said the goal was to change the system. “We don’t want to reinvent the wheel,” she said. “But we do want to bring best practice elsewhere to Ireland.”

She said Ireland had already shown it could do this, pointing to the improved treatment of older people who have strokes.

“Cerebral palsy is a brain injury in a child before they ever walk, before their brain is fully developed,” Collison said. “With a stroke, you’re regaining function with rehabilitation whereas in a child with cerebral palsy, it’s gaining function. It’s not rehabilitation as it’s ‘habilitation’ because they never had a function in the first place. A child is trying to learn, to develop function, to develop speech, to develop walking in the presence of a brain injury.

“We’re trying to solve a really difficult problem. We want to work with people to improve cerebral palsy care. We’re not coming in saying we just want to work with clinicians or researchers. We want to work with you.”

Collison added: “I want people to reach their potential in life and not be limited by the standard of care.”

Byrne added that they were collaborating with the HSE too. “We want to show models that we can build and scale and really embed them into the system,” she said.

“What would success look like in five years? It’s having every child and every adult being able to access good care but beyond that because Ireland has extraordinary people it is actually advancing it for others too.”

Both Collison and Byrne believe Ireland could become a leader in the field. “If we do this in Ireland then it could be replicated in other countries,” Collison said. “There’s absolutely no reason we can’t use this learning to go to other countries.”

*****

Tommy Collison never ended up in a wheelchair. He did need more surgeries, but much fewer than if he had stayed at home. He studied journalism at New York University, did a stint as an intern in The Business Post, and in 2021 he joined a hot tech start-up, Retool, as head of communications, strategy and business development.

The following year Retool, an internal software builder, raised $45 million at a $3.2 billion valuation. He married recently and is living an independent and happy life in San Francisco, where his two brothers are also based.

Lily Collison had a successful career in science and as a businessperson, and even if her children had not been so successful, she had no need to continue working.

However, she felt drawn to work to improve the lives of people with cerebral palsy because she realised the difference it had made to her son and her family. “If you ask me what’s my proudest achievement in life, it’s that Tommy got the right surgery at the right time,” she said.

“The right surgery prevented a lot of problems for Tommy. He is now working in tech, married, living a full life. He has moderate cerebral palsy, not severe but not mild. So many people with cerebral palsy are unemployed, not in relationships. They don’t have children. This is a physical disability that can hold them back so much in life.

“What keeps me going is that surgery is still not available in Ireland. Single-event multilevel surgery is very standard. It’s evidence-based best practice but it’s still not available in Ireland.

“Tommy is 30 now. He’s an adult and flying it. I’m retired but what brought me back to work on this is because I care deeply about the other people like Tommy in Ireland. Having learnt about it, and been on the journey, I know there’s so much more we could do for people with cerebral palsy.”