Almost a year into its function, the Irish Cerebral Palsy Foundation’s initiative of distinction, co-financed by technology moguls John and Patrick Collison, seems to be making headway in lowering the age at which cerebral palsy (CP) is diagnosed and in accelerating top-tier clinical care for those living with CP.
The foundation, of which the Collison brothers’ mother, Lily, is a board member, spearheads the programme. Lily has also authored literary works on the subject of CP. Her other son, Tommy, who is afflicted with CP, is the motivation behind the Stripe founders’ involvement. CP, a group of conditions that impairs movement and posture due to damage to the maturing brain, often before birth, is the leading childhood-onset, life-long physical disability.
Sharing the recent accomplishments of the programme, Lily highlighted that early detection mechanisms have been implemented in Ireland’s four premier maternity hospitals, with over a hundred medical practitioners trained for the same. Early diagnosis of CP enables prompt intervention and the application of proven early-stage treatments that can help alleviate the impact of the brain injury. Such interventions leverage the brain’s neuroplasticity, or its capacity to alter, which is highest during its initial development stages, Lily explained.
Lily, expressing pride in her son Tommy’s prompt orthopedic operation, firmly believes that the surgery set the groundwork for his future. At the age of 30, Tommy is now married and resides in California, employed in the tech sector. He received his CP diagnosis when he was one. Lily and her husband, Denis, after exhaustive research into optimal practice, arranged his care in the United States.
The goal of this novel programme is to make optimal CP care accessible in Ireland. Lily, recalling her own experience as a mother of a child diagnosed with CP, empathised that receiving this news can be incredibly daunting, but the struggle to secure the best possible care for your child can be even more difficult. She stressed that this level of care should be a basic human right available to all children in Ireland.
She highlighted the significance of the initial 1,000 days, taking hemiplegia as an example, a form of cerebral palsy (CP) that affects one side of the body. Individuals affected by it often lean on their ‘better’ side, which restricts the day-to-day tasks requiring both hands. Inexpensive and straightforward techniques, like placing a soft mitten on the better hand, can help encourage the use of the weaker hand. Not unlike how a patch works on a weaker eye.
“We strive to diagnose within three months, definitely not beyond a year. There’s no question in my mind that Tommy could have been diagnosed earlier, providing opportunity for early intervention. The early detection programme will expand beyond our initial four hospitals in its next phase.”
Tommy’s siblings, John and Patrick, co-founders of payment service company Stripe, are among the philanthropic investors for this initiative. The venture looks to radically alter the care provided for an estimated 3,000 children and adolescents, and around 9,500 adults coping with CP in Ireland. These figures are derived from other countries’ data, as Ireland currently holds no CP register – an issue being addressed in the programme.
A new cerebral palsy advocacy group has been established by the programme, akin to those catering to scoliosis and spina bifida. Lily Collison encourages families to join them by emailing edel.davinpower@yourcpf.org.
Lily adds that the new advocacy group is much needed. “There is a significant need for orthopaedic surgery in CP. Scoliosis and spina bifida surgeries often create a buzz, but CP was always left out since there was no dedicated group advocating for it. Close to 40 percent of children suffering from CP develop scoliosis and some of them will require spine surgery.”
She further adds, “Single-event multilevel surgery (SEMLS) is another crucial orthopaedic procedure which has shown a high success rate in addressing multiple issues in one go, leading to better results for children with CP. Tommy underwent the SEMLS procedure in the US two decades ago, which comprised 13 procedures within one operation. It is expected that around 70 children annually in Ireland miss out on this surgical procedure.”
The growth phase of children significantly differs from that of adults; it is continuous and has a limited period for the best results. One of my greatest accomplishments is providing Tommy with opportune orthopaedic surgery, which has significantly shaped his life. Likewise, every child in Ireland should be granted timely access to appropriate surgical care. this is not simply an aspiration but rather an essential route we need to take definitive actions towards.
Cerebral Palsy (CP) often presents itself with a frequent complication known as hip displacement, underlining the importance of vigilant monitoring and time-sensitive surgical interventions. Remedial hip surgeries have been successfully phased out in countries like Australia and Sweden through vigilant monitoring and immediate medical responses. Ireland’s CP Programme aims to mimic this accomplishment. However, to achieve this, prompt access to orthopaedic surgeries for afflicted children is crucial.
Lily Collison informed that the CP programme has allocated leadership roles at UCC, TCD, and Ireland’s Royal College of Surgeons (RCSI). The RCSI spearheads the adult section of the programme as Ireland collaborates with an international team to formulate a clinical practice guideline for adults with CP. The CP-life Research Centre, a research hub, was inaugurated at RCSI in September, with Dr Jennifer Ryan at the helm.
Ireland’s inaugural chair of CP and early brain injury at UCC was recently accorded to Prof Deirdre Murray.
We couldn’t imagine when we interacted with Lily Collison and Rachel Byrne, the executive director of the Cerebral Palsy Foundation, back in April 2022, that we would be considering such wide-ranging prospects, says Prof Geraldine Boylan, director of Cork’s Infant research centre. The CP Programme has taken the initiative, in collaboration with the tertiary neonatal intensive care units, to recruit infants under the leadership of Prof Brian Walsh, a neonatologist and principal investigator at Infant.
Prof Boylan stated that the newborn screening project has standardised the follow-up process for these children. This ensures that trained specialists using evidence-based assessments review them at the most suitable time. The project, since introduced in mid-2023, has counted more than 200 newborns. This investment has invigorated Ireland’s CP research, and additional research programmes are due to be announced.
“Lily Collison declares, with unwavering conviction, that difficult challenges can be vanquished, only when we set a united front, and hold firm our belief that major systemic reform is attainable. This is our call to action for all parents, individuals afflicted with CP, healthcare professionals, researchers, contributors, policy makers, and political figures to step up and take the lead. Ensuring your backing will turn Ireland into a global pioneer in CP care is imperative. Anything less is unjustifiable for those in Ireland living with CP,”
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