Cerebral Palsy: ‘It is tough hearing that news, but it is far tougher when you have to fight for the best care for your child’

Nearly a year into operation, the Irish Cerebral Palsy Foundation’s programme of excellence, which is part-funded by tech billionaires John and Patrick Collison, looks to be making progress on reducing the age of diagnosis of cerebral palsy (CP) and expediting best clinical care for those living with CP.

The Stripe founders’ brother, Tommy, has CP and their mother, Lily Collison – who has written books on the condition – is a board member of the Cerebral Palsy Foundation, a global not-for-profit, which leads the programme. CP is the most common childhood-acquired, lifelong physical disability. It is a group of conditions that affect movement and posture, and is caused by damage that occurs to the developing brain, often before birth.

Giving an update, Lily Collison said the programme had already rolled out early detection across the four leading maternity hospitals in Ireland with training of more than 100 medical professionals. “Early detection of CP is so important for early intervention – the implementation of evidence-based early treatments that help minimise the effects of the brain injury. Early intervention takes advantage of the brain’s neuroplasticity, its ability to change and greatest in early life.”

Tommy’s timely orthopaedic surgery is my proudest achievement in life. Witnessing Tommy, I firmly believe that surgery set him up for life

—  Lily Collison

Her son Tommy, who is 30 and recently got married and now lives in California, where he works in tech, was diagnosed when he was one year old. After researching extensively on what was best practice, Lily and her husband Denis secured care for him in the United States. The aim for this new programme is that best-practice CP care will be available in Ireland. “I was that mother with a child with a diagnosis of CP. I can tell you it is tough hearing that news, but I believe it is far tougher when you have to fight for [the] best care for your child. It should be available to all children in Ireland as a basic human right,” she said.

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She said the first 1,000 days are crucial. “Take hemiplegia, this is the type of CP affecting one side – individuals with hemiplegia often favour their ‘good’ side, hindering daily activities needing both hands. Simple, inexpensive methods, like using a soft mitt on the good hand, restricting its use, encourage use of the weaker hand, much like the effectiveness of patching a weaker eye.

“The ultimate target we have is diagnosis within three months, not just under 12 months. I have no doubt that Tommy could have been diagnosed earlier, thus allowing for earlier intervention. The next phase of early detection will extend the programme beyond these first four hospitals.”

Tommy’s brothers, John and Patrick, who cofounded the payment service provider Stripe, are among the donors of philanthropic funding for this programme, which aims to revolutionise care for the estimated 3,000 children and adolescents and 9,500 adults with CP in Ireland. This number is extrapolated from other countries’ data as there is no register of those with CP in Ireland and developing one is included in the programme.

The programme has already set up a new CP advocacy group – similar to those for scoliosis and spina bifida – and Lily Collison urges families to email edel.davinpower@yourcpf.org to join.

She said the new advocacy group was long overdue. “CP has a huge requirement for orthopaedic surgery. We hear about the delays for scoliosis and spina bifida surgery, but because up to now there was no advocacy group for CP they were left out of this conversation. Indeed, roughly 40 per cent of children with CP develop scoliosis and a percentage of those will need spine surgery.

“Another crucial orthopaedic surgery, single-event multilevel surgery [SEMLS], has demonstrated its efficacy in correcting multiple issues in a single operation, offering best outcome for children with CP. Tommy had SEMLS in the US 20 years ago – he had 13 procedures in a single operation. It is estimated 70 children annually in Ireland are not receiving this surgery.

“Unlike adults, children are in a constant state of growth, and the window for optimal outcomes is narrow. Tommy’s timely orthopaedic surgery is my proudest achievement in life. Witnessing Tommy, I firmly believe that surgery set him up for life. It’s not just Tommy; every Irish child deserves the right surgery at the right time. This isn’t just a goal: it’s an imperative that we must prioritise and actively make a reality.”

Hip displacement, a common issue in CP, highlights the importance of monitoring programmes and again timely surgical interventions. “Countries like Australia and Sweden have successfully eradicated the need for salvage hip surgeries through proactive monitoring and prompt action. Ireland’s CP Programme seeks to replicate this success, but, again, it hinges on having timely access to orthopaedic surgery for affected children.”

Lily Collison said the programme had established CP leadership positions in UCC, TCD and the Royal College of Surgeons in Ireland (RCSI). “The adult part of the programme is being led by RCSI and Ireland is currently working with an international group developing a clinical practice guideline for adults with CP. Last September, a research hub called CP-Life Research Centre was established at RCSI, under the leadership of Dr Jennifer Ryan.”

Prof Deirdre Murray has recently been appointed as Ireland’s first chair of early brain injury and CP at UCC.

“It is hard to believe that it was just April 2022 when we met Lily Collison and Rachel Byrne [who is the executive director] from the Cerebral Palsy Foundation and began exploring possibilities,” said Prof Geraldine Boylan, who is director of the Infant research centre in Cork. “The CP programme has already developed a collaborative project recruiting infants in the four tertiary neonatal intensive care units and led by neonatologist and Infant principal investigator Prof Brian Walsh.

“The early-detection project has standardised the follow-up of these children, ensuring they are seen by trained specialists using detailed, evidence-based assessments at the optimum time. Since its launch in mid-2023, over 200 newborns have already been enrolled into this project.” She said the investment had galvanised research efforts for CP in Ireland and more research programmes would be announced soon.

“With an attitude that we can solve difficult problems, with all of us working hard together, and with a shared vision that major systems change is possible, we will improve the lives of Irish people living with CP,” Lily Collison said. “This is a call to parents, people with CP, medical professionals, researchers, donors, politicians and policymakers to be at the forefront. Your support will ensure Ireland will become the world leader in CP care. Irish people living with CP deserve no less.”

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