Just4Children are fundraising to adapt a home to help Lexie to live more independently.
Lexie lives in Cranleigh, Surrey. She has an ultra-rare genetic syndrome called a CACNA1C-related disorder (CRD).
CRDs include a spectrum of conditions characterised by a range of cardiovascular (increased risk for abnormal heart rhythm (arrhythmia) and structural heart problems) and/or neurologic symptoms. Whilst Lexie does not currently present with cardiac concerns she is regularly monitored.
The main challenges for Lexie are neurological and include developmental delay, intellectual disability, autism spectrum disorder (autistic features), incoordination, ataxia, hypotonia (low muscle tone), attention deficit hyperactivity disorder (ADHD), and seizure disorder (epilepsy).
Lexie requires tailored individual support in her specialised school that fully understands and can support her specific complex mental health and developmental needs.
At home, Lexie will continue to need an ongoing high level of support as she grows to maintain her well-being, provide reassurance, build confidence and reduce her severe anxiety. With the mental age of a much younger child, Lexie presents with very challenging behaviour and requires lots of support to keep herself and her siblings safe.
At 15 years old she is unable to do what children of her age can. Lexie needs support to dress, wash, toilet, feed and complete most everyday tasks we all take for granted. She thrives on routine and predictability and is considered very vulnerable in the external world, particularly as she does not understand his own needs.
Just4Children are raising money to create Lexie her own safe space within the family home – an accessible bathroom, a safe bedroom and a calming therapeutic sensory space. Requiring 24-hour support for her seizures and unpredictable yet reliable nighttime waking Lexie will also need specialist equipment.
It’s a big ask but Lexie, her siblings and her parents need your support. Please help us reach the goal of making Lexie’s life a bit easier for her as she deserves it. The impact will be immense for the rest of the family.
