Our daughter Lydia has a rare chromosome disorder called syngap1, it has many symptoms including severe learning disability, epilepsy, autism, behavioural abnormalities, low muscle tone, impaired language development & dyspraxia to name a few. Lydia will need to access healthcare for the rest of her life, this includes physio therapy, speech & language therapy, hydro therapy, neurologist, development therapy, occupational therapy orthopaedics & behavioural therapy, although a lot of this is available to access via the NHS, due to the rarity of her condition, not many medical professionals understand her diagnosis.

We as parents have a constant battle to ensure she has access to everything she requires to make sure she reaches her full potential, we have no choice but to reach out to private therapies which are very expensive.

We are hoping with the help of our friends and family and extended friends to organise fund raising events to help us as a family with the ever-increasing costs.

Thank you in advance for taking the time to read this and we will be posting shortly with upcoming events.