Meet our beautiful, loving and cheeky daughter, Elodie.

Elodie is aged 5 from Southampton who just happens to be living with a neurodevelopmental disorder called ReNU syndrome.

Elodie loves life. She has a massive personality, great sense of humour and produces the most enormous belly laughs. We want her to be able to live life to the fullest, but sadly the cost of private therapies and specialist equipment isn’t sustainable and we need support through fundraising to help her thrive and enjoy life as much as possible.

Elodie was born with brain abnormalities and has profound neurodevelopmental, physical and communication disabilities (she is non-verbal) and complex medical needs including epilepsy, which impacts upon every aspect of her life. Elodie’s seizures happen in her sleep and/or are triggered by tiredness, waking up and illnesses.

In spite of her condition, Elodie is generally a happy, sociable little girl who without realising it faces and copes with so many challenges on a daily basis.

Over the last couple of years the smallest of milestones have been met with tears of joy, as she has amazed us. As a newborn baby, we were told she would never talk and never walk. However, at 27 months old Elodie took her first steps. Elodie is improving lots and she has so much potential it’s just a case of unlocking it.

We are currently under NHS physiotherapy, speech and language and occupational therapy services, which she receives at her wonderful special needs school. Unfortunately, the intervention that Elodie needs far exceeds what the NHS and us as parents can offer in terms of benefit, but also in cost.

Elodie has begun private speech and language and sensory therapy program at Brainwave with prices costing £500 a day. The therapy is worth every penny helping to give Elodie a voice through augmentative and alternative communication (AAC). The sensory therapy she receives is also very crucial for Elodie as she has significant difficulties processing sensory information, which impacts upon her attention, emotional reactions and motor skills development. The NHS occupational therapists in Southampton City Council do not cover sensory issues so without private therapy it would be hard to meet her sensory needs to allow other skills to develop. Sensory therapy will support Elodie’s ability to interpret sensory input and improve her postural control, balance, coordination and motor planning which will help her participate more successfully in everyday tasks.

We are also raising funds for hydrotherapy. Elodie has been swimming since she was a tiny baby and absolutely loves the water, however swimming classes are now too advanced for her. A hydrotherapy programme has been designed specifically to improve Elodie’s strength, muscle tone, balance, coordination, endurance and walking. Her love of the water will aid Elodie’s progress as she will be more compliant with exercises in the pool than she would on land.

In order to keep Elodie safe we are additionally fundraising for specialist equipment including, but not limited to, adaptations to her modular Mascot specialist bed and a SATs monitor for monitoring her seizures at night time. As with most special needs equipment, they are pretty expensive. We want Elodie to be able to sleep safely, so we can sleep soundly.

ReNU syndrome was only discovered by geneticists in 2024 and so the future for Elodie is still very uncertain. Additional equipment will likely be needed to empower Elodie to give her the tools to 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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