A parent carer journey from the fab Kaddy, a valued part of NSPCWT's Steering Group:

Kaddy Thomas from Clevedon in Somerset was born in 1968 with Apert Syndrome. The Doctors gave a severely mentally impaired diagnosis however the syndrome only related to the shape of her skull, hands and feet. Apart from how she looked, she was a normal, happy and healthy child. 

She knew her son would have a 50% chance of also having Apert Syndrome, which he did. He was born a happy, content, healthy boy – who just needed surgery to his skull to change its shape. After the operation he had an infection which left him severely brain damaged and needing around the clock specialist care. Her life changed forever from that point, and this is when she became a full-time carer. 

Alongside being a full time mother, Kaddy is also a care Manager for Elijah’s team, an Apert Syndrome Expert, CEO & Founder of Elijah's Hope CIC which supports children and families with Apert syndrome and Expert By Experience Consultant. 

What’s important to Kaddy? 

'Elijah, my adorable son, to enable him to have the best life, of a good quality, and to give him great teenage years. To be well and of sound mind, we need good support mechanisms. Having now been mentored and coached which continues, I’m very delighted to say I am now well supported. I want that for others. 

⭐I plan to enable Elijah to have an extra ordinary life and to set up a coaching project giving tangible help and support to parents.

 I want every family affected in any way by complex health, disability, mental health and any other ailment that may affect them to be well supported, valued and empowered to enable them to strategically fight for the needs/requirements of their Children’❣️

Carers Collective (Kaddy founded this support network): https://www.carers-collective.co.uk/ 

Interview with Kaddy: https://youtu.be/rGTudSFUR5M

Written May 2023