Understanding Complex Needs Together

At Go with Ro, our aim is to bridge the gap between children with complex medical needs and their peers. We actively engage with community groups, schools and local projects to share our personal experience of life with a child with those needs. Through inspirational talks or a hands on discovery session with feeding tubes and pumps, we cater for all ages with interest. We hope that by meeting Ro and learning about her equipment, that children will feel more confident to engage with similar children in their community. 

We offer the following:-

• Hands on demonstrations of medical equipment in an age appropriate manner. For example, what feeding tubes can look like, what theyre for and how they work.
• Meet and Greets with Ro and/or her parents and carers, we promise she will bring great joy to anyone who meets her.
• Inspirational talks about our personal experience, caring for a child with complex needs. 
• Wheelchair walks
• Reassurance and companionship for other Parents/Carers/siblings beginning their care giving journey.

Rowanna is a delightful 3 year old little girl, living with CTNNB1 syndrome. CTNNB1 is a rare neurodevelopmental genetic disorder with currently no cure or treatment. Rowanna loves music, colourful lights, Cbeebies and spending time with her family and friends. She loves interacting with people and seeing new faces.