Halving the age at which cerebral palsy (CP) is detected is the aim of a new medical and research initiative largely funded by tech billionaires John and Patrick Collison.
The two businessmen – whose brother Tommy has the condition and whose mother, Lily, has written books about it – have, along with other donors, given €11.6 million for a programme of excellence in cerebral palsy care.
The programme of excellence aims to make Ireland a world leader in care and treatment of the condition, which is the most common lifelong physical disability acquired in childhood.
At present, CP cases in Ireland are diagnosed at an average age of two, compared to six months in the US. The five-year programme aims to ensure all cases are diagnosed within the first year of life, thereby allowing for essential early interventions.
“The newborn brain has plasticity so if we recognise there’s a problem very early we can help it to retrain, adapt and bypass areas where there is a problem,” Prof Geraldine Boylan, director of the Infant research centre at University College Cork, told guests at the programme launch. “It’s much harder later on.”
Lily Collison said her son Tommy has lived a full life despite having CP and it has not defined him. At the age of nine, he underwent single-event, multilevel surgery in the US, followed by intensive rehabilitation, which resulted in a much better outcome than a series of surgeries over time.
“Getting the right orthopaedic surgery at the right time helped shape Tommy’s life. Getting the right treatment at the right time is critical to making a difference in outcomes for individuals with CP,” Ms Collison said.
She said her dream is that in the future, we will have the world’s leading CP specialists – orthopaedic surgeons, therapists, neurosurgeons, researchers – here in Ireland.
Cerebral palsy is the name for a group of lifelong conditions that affect movement and co-ordination, which are caused by a problem with the brain that develops before, during or soon after birth. Many people with the condition face problems with movement, speech and other body systems, but early intervention and proper care pathways can make a significant difference to outcomes and quality of life.
About 150 babies receive a cerebral palsy diagnosis in Ireland each year, and an estimated 3,000 children and young people and 9,500 adults are living with the condition.
Fourteen-year-old Rachel Doak, from Redcross, Co Wicklow, said her wish was for a better understanding of CP as a disability separate from others. “People tend to jump to conclusions. They think that because you’re in a wheelchair you have an intellectual disability or that you can’t speak for yourself,” said Rachel, who is hoping to become a journalist.
Rachel was operated on when she was six and is likely to have multiple surgeries soon. “I’m not looking forward to it but it will definitely help,” she says, adding that in relation to her condition the “good things definitely outweigh the bad things”.
Her mother, Sarah Burns, stressed the need for early intervention, for services to continue into the teenage years and for the availability of specialised, expert staff attracted to work in the area by excellent working conditions.
The five-year programme will operate through hubs in University College Cork, Trinity College Dublin and the Royal College of Surgeons in Ireland, and is based on four pillars: clinical practice, research, education and advocacy.
The early detection of cases in the first two years of life, orthopaedic care, motor management services and adult services and supports comprise four priority areas for the initial phase of the programme.
“Our vision is to make Ireland a world leader in the delivery of cerebral palsy care.” said Rachel Byrne, executive director of the Cerebral Palsy Foundation. “We want to create a sustainable continued care model for infants through to adults with CP in Ireland led by expert clinicians and researchers. We will leverage our extensive network and international expertise on best practice to help drive the programme through collaboration. We welcome all partners, including the CP Community, academia, industry, and government to join us on this journey.”