New President for Cerebral Palsy Alliance

Will overwrite featured video.
mum, dad with 3 sons and daughter
 
Will overwrite featured image.
 

As a parent of a child with cerebral palsy and in his new role as President of Cerebral Palsy Alliance, Paul Masi is keen to improve opportunities for children and adults with cerebral palsy to maximise their potential.

When Paul and Anne Masi welcomed their youngest child, Grace into the world, they were already busy juggling the demands of work and raising three sons.

It soon became apparent that Grace wasn’t reaching her developmental milestones, so they began a frustrating journey to find out why.

‘We visited doctors on numerous occasions, and saw early childhood centre nurses who told us Grace was lazy and that she would catch up.’

‘Grace was a floppy baby and her low level of functioning such as delays in reaching for objects, sitting, crawling, walking and even babbling were misinterpreted as laziness.’

‘It wasn’t until Grace was 18 months old we eventually received a diagnosis. Our daughter wasn’t lazy at all, she had cerebral palsy,’ said Paul.

The family decided to set up their own intensive home-based therapy program for Grace to progress her in all delayed aspects of her development. In addition to this, they visited doctors, speech therapists, physiotherapists and occupational therapists.

Grace took her tentative early steps when she was about 3 years of age. She walks with poor balance and falls frequently. She is non-verbal and needs assistance with communication and all her self-care needs.

Grace is delayed in all aspects of her development – gross motor, fine motor, cognitive and academic skills – but she has made tremendous progress with the help of therapists at Cerebral Palsy Alliance and an intensive home based therapy program.

As a parent of a child with cerebral palsy and in his new role as President of Cerebral Palsy Alliance, Paul Masi is keen to improve opportunities for children and adults with cerebral palsy to maximise their potential.

‘One of the greatest impacts of new research findings is keeping families buoyed with hope that one day all the answers will be found,’ says Paul.

‘From a parent’s perspective I know how hard it can be to watch your child struggle with so many things in life that many people take for granted’

‘Grace is delayed in all aspects of her development – all gross motor, fine motor, cognitive and academic skills.’

‘But my wife and I know that having access to the right support services has meant our family have been able to give Grace the best chance of engaging with her world.’

‘I think it’s important that everyone who lives with cerebral palsy, whether it’s an individual, a sibling, a parent, a carer, a grandparent, a disability support worker or an employer, has access to the support and services they need to help them reach the goals that are important to them.’

‘I feel privileged to be working with such a committed and dedicated team of therapy professionals who all play a part in building the best possible future for children and adults with cerebral palsy.’

Paul’s interest in helping to improve the quality of life for people with cerebral palsy is matched by his passion for cerebral palsy research. Before joining Cerebral Palsy Alliance’s Board of Directors, Paul was a Governor for the organisation’s Research Foundation.

‘One of the greatest impacts of research is keeping families like ours buoyed with the hope that the answers to cerebral palsy will be found,’ says Paul.

‘Supporting cerebral palsy research is not just about finding prevention and cure. It’s also about improving the lives of people with cerebral palsy through studies into more effective forms of therapy and interventions.’

‘It would be wonderful if the work of the Research Foundation meant that families did not have to face the same challenges we did during those early years.’

‘By supporting research, society can play a huge part in piecing together the puzzle of cerebral palsy. To see the community marshalling resources to better understand cerebral palsy is very satisfying.’