Eliza was born in 2017 and has been following a Brainwave Therapy Programme since 2019. 

Eliza is a little fighter and during the national lockdown in Spring 2020, she amazed everyone by walking for 26 minutes for the 2.6 challenge. She raised over £3,500 for Brainwave and Unique!



Written by Hannah, Eliza's mum

"Eliza was born in 2017. Her birth was nothing out of the ordinary, she was a little on the small side but all observations were good. As Eliza got older, we noticed that she wasn't developing as you would expect. Most babies her age were sitting, rolling over or crawling but Eliza was unable to. This is where our journey began and in February 2019, we received a diagnosis of a rare chromosome disorder, STXBP1. 

STXBP1 affects approximately 300 children in the world. A disruption or absence of this gene results in abnormalities in the function of the brain which can lead to seizures, developmental delays, learning delays and behavioural problems. As with all chromosome disorders, there is no cure and therapy is needed to treat the symptoms.

We first came to Brainwave in November 2019. Immediately we were impressed by the ease of booking the first session and loved the added benefit of the onsite accommodation. Our first contact was with a Family Facilitator and it was a fantastic insight on what to expect on our first visit. Small touches like asking about whether to remove certain toys or objects from the room that would upset or distract Eliza just showed how much this charity really is so experienced in dealing with children with special needs.

At Brainwave, it was amazing to spend two days with therapists who could really take the time to get to know Eliza, we were able to go at her pace and take breaks when she was tired. We visited Brainwave at a point where we were really stuck for ways to motivate Eliza to do her physical exercises, the combination of physio with ideas from the Speech and Language therapist gave us new ideas and we were able to take these away and put them into practice at home.

The home-based Therapy Programme was clear and easy to follow for us and we shared it with her nursery and they were able to incorporate the activities into her day.

Since our last visit Eliza is making great progress, she is taking a few steps holding one hand, progressing amazingly with the walker and can finally climb off the sofa backwards and not head first! She can also point to her head, nose and ears and loves to interact with a speaker button while reading a simple story."

We are hugely thankful to Brainwave. Please keep doing what you do it makes a huge difference to all those extra special children like Eliza.