Cerebral palsy patient beats the odds to live independently

A woman with cerebral palsy, who doctors thought may never walk or talk, is now living an independent life thanks to taking part in a clinical research study.

Grace Stynes, who lives in County Kildare, Ireland, has dystonic cerebral palsy. She took part in the CO-OP study, a National Institute for Health Research (NIHR) portfolio study which was supported by the NIHR Clinical Research Network South London. The trial tested a new approach to occupational therapy at the Evelina London Children’s Hospital, where specialists work with patients on step-by-step plans to set and achieve their own goals.

Dystonic cerebral palsy is a neurological condition which causes involuntary movements resulting in twisting, repetitive movements and abnormal postures. The condition affected Grace’s limbs, making it difficult for her to complete everyday tasks such as walking, eating or going out with her friends.

Grace now lives independently at university where she is studying Psychology, English and Anthropology. She hopes one day to conduct her own research into disability and mental health and is keen for others to take part in clinical trials.

The 19-year-old said: “This is by far the most effective therapy I have ever received and the outcomes have been incredible. I can now go out and eat ice cream with my friends without being embarrassed; I can brush my teeth and I can ride a bike.

“The main difference between the CO-OP approach and the therapy I have received before is that this treatment looked at the task that I wanted to achieve and not my disability. I made a step-by-step plan of my goals, which meant that I was able to find out exactly where I was going wrong and could try out different ways to achieve the specific steps.

“I literally feel like I can do anything now, and can’t begin to tell you how much it meant to me to be in control of my treatment.”

Occupational therapist Hortensia Gimeno was Principal Investigator on the trial, and delivered Grace’s therapy. She said: “The CO-OP approach helps to empower patients with movement disorders by giving them the problem-solving skills needed to overcome challenges in their daily lives.

“We want to help people with these conditions gain confidence, by enabling them to achieve the goals that are important to them from dressing, to riding a bike.”

Proud mum Sebrina said: “We struggled initially when Grace was diagnosed as we were told she might not be able to talk or walk.

“Before the trial, if I saw Grace struggling I’d feed her, get her a straw or pick her up and I don’t do any of that anymore. I know she is able to cope which has helped me with letting her live away from home at university.

“We are both just so proud of her. Her dad and I admire the way she looks at life. Grace just figures things out and moves on.”