Publish date: 22 July 2025
A former BTH nurse has founded a support group to help navigate the demands of caring for a child with a disability.
Raising a child with neurodevelopmental disorders, disabilities, or special educational needs and disabilities (SEND) presents complex challenges that extend beyond clinical care.
Chiara’s son, Bodhi who is now eight years old, was diagnosed with epilepsy aged just nine months. This was a pivotal moment that marked the beginning of a very challenging journey through neurodiversity and disability, leading to the distressing diagnosis of a rare genetic syndrome in 2023.
Throughout Bodhi’s ongoing care, Chiara and her family have engaged with multidisciplinary teams, including neurology, epilepsy, paediatric nursing, and allied health professionals, receiving vital clinical and therapeutic support.
Chiara said, “The biggest support I have found is from other parents/carers of children with a disability. The simple knowledge that there is someone that truly understands the struggles you face every day because they are experiencing it too changes everything.
“This aligns with evidence proving that peer support networks can significantly reduce parental stress, improve coping mechanisms, and foster resilience among caregivers of children with complex needs.”
Chiara attended a ‘Riding the Rapids’ course, which aims to help parents to understand and manage challenging behaviour shown by their child. It was here where she met other parents going through the same difficulties for the first time. From this, Chiara had the idea to create a local support group and now runs this alongside Charlotte Turek, one of the mums she met on the course.
Parents/carers who attend the group can gain support with practical things like education, health and care plans (EHC plan), equipment and support with their own parental wellbeing.
Chiara continued: “The aim of the group is to create a community that helps empower and support each other. Each session we invite a guest speaker, to discuss a variety of topics with an emphasis on the self-care of the parents/carers ending each session with some meditation.”
Creating this group has allowed Chiara to turn her pain into purpose and while everyone’s circumstances are unique, the group provides a safe space for sharing experiences and receiving practical advice from those who truly understand.
“We can’t promise to have the answer to everything, but we’ll be there to listen and to advise. At the sessions people open up and there’s a lot of releasing”.
Chiara now works as a nurse practitioner and runs 'Skindeep Medical,' a private clinic specialising in medical aesthetics and dermatology.
The group meets at the Village Centre in Great Eccleston on the last Wednesday of each month. If you would like to join the group or find out more, contact Chiara on 07704064196.
