Meet Elodie - a loving, cheeky, and determined six-year-old girl from Southampton with a heart full of joy and a huge love of water. She just happens to have a rare neurodevelopmental disorder called ReNU syndrome, which affects her brain, body and ability to communicate.

Despite the many challenges she faces - being non-verbal, living with epilepsy and managing daily sensory and physical difficulties - Elodie amazes everyone with her determination, infectious laughter and unwavering spirit.

When Elodie was born, doctors told us she might never walk or talk, but our little fighter had other plans. At just 27 months old, she took her very first independent steps. While Elodie will always be non-verbal, she has so much say and with the right support, we believe she can continue to defy expectations.

Why we are fundraising for Just4Children

We’re raising funds to help Elodie access specialist therapies, adaptive tools and equipment that will empower her to communicate, move with confidence and explore the world around her.

Elodie currently receives physiotherapy, speech and language and occupational therapy through the NHS at her wonderful special needs school. We’re so grateful for this support, but the level of intervention Elodie truly needs goes far beyond what the NHS (and we as parents) can provide alone.

Specialist Therapies

Elodie has recently begun a private therapy programme at Brainwave, where she receives specialist speech and language therapy and sensory therapy — at a cost of £500 per day. Elodie has also started hydrotherapy with Solent Hydrotherapy and Rehabilitation Centre (SHARC).

These sessions are life-changing:

• Speech and language therapy - helps Elodie find her voice through augmentative and alternative communication (AAC) tools.

• Sensory therapy - supports Elodie’s ability to process sensory information, improving her attention, emotional regulation, balance and motor skills, which are things many of us take for granted.

• Hydrotherapy - plays a vital role in Elodie’s development and recovery. Elodie’s bones are more fragile, making her susceptible to fractures and breaks. In the past two years alone, she has suffered two leg fractures, each time having to relearn how to walk. The buoyancy of the water provides gentle support for Elodie’s body, reducing the strain on her bones and joints while allowing her to move freely and safely.

Equipment

Elodie’s seizures occur in her sleep or are triggered by tiredness, waking up and illness. To help keep her safe and support her independence, we’re also fundraising for:

• Adaptations to her Mascot modular specialist bed

• A SATs monitor to track oxygen levels and seizures overnight

• An AAC device to help her communicate

• A specialist trike to help her enjoy movement and play outdoors

As with most specialist equipment, the costs are high, but the impact on Elodie’s safety, independence and joy will be priceless.

ReNU syndrome was only identified by geneticists in 2024, meaning there’s still so much we don’t know about what the future holds and what equipment she may need in the future. What we do know is that early, consistent therapy and access to the right resources and equipment can make a huge difference in helping Elodie live life to the fullest.

It has been a hard decision to fundraise, but we feel that Elodie would hugely benefit. So, please if you can even spare a few pounds or a share we would be forever grateful.

Thank you

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Info for donors