Although she was tiny, no one suspected baby Rowanna was anything but healthy until at 8 weeks old she started to experience ‘startle reflex’. All day, every day Rowanna would throw her head back and extend her arms and legs without the usual stimuli expected to cause such behaviour. As concerns built, an aunt noticed that there was something unusual about one of Rowanna’s eyes and the family scheduled an appointment with an optometrist. This began a whole host of appointments and hospital visits which eventually resulted in Rowanna’s diagnosis.

Aged three, Rowanna is living with an extremely rare neurodevelopmental disorder called CTNNB1 syndrome. With less than 500 diagnosed cases globally CTNNB1 syndrome is caused by chromosomal abnormalities and associated with a wide range of symptoms including developmental delay and movement difficulties.

Rowanna struggles to both sit and stand due to her illness and in need of a comfy chair to relax in. Her physiotherapist suggested a P-Pod and pointed Amy in React’s direction. We were delighted to award a supportive comfortable chair for Rowanna and her mother tells us Rowanna loves her new chair and she occasionally falls asleep during movie nights! The family were delighted to learn that they could also take a free mobile home holiday with React and Amy explained, the whole family was delighted by the unexpected surprise and booked as soon as they could. Mum, Dad and Rowanna are now back from their break and we are delighted to share their wonderful photos and brilliant feedback:

“Living on a budget it was really helpful to have the opportunity to have a family break. It was like a home away from home, the caravan was immaculate and Rowanna loved all the entertainment. Passes were included, we went swimming and there was even a sensory room which Rowanna really enjoyed.”