Empowering Elodie

Just4children are fundraising for costly equipment and private therapy to give Elodie the best opportunity to thrive and flourish and help her become as independent as possible.
£9925
Total raised
49%
£20,000.00
Target
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46 donations

Empowering Elodie

Just4children are fundraising for costly equipment and private therapy to give Elodie the best opportunity to thrive and flourish and help her become as independent as possible.

Meet our beautiful, loving and cheeky daughter, Elodie.

Elodie is aged 4 from Southampton. She is a SWAN (Syndrome Without A Name) child, which means she has a long list of disabilities and difficulties and no overall diagnosis. We have a multitude of doctors and specialists; at one point we had 16 specialists involved in Elodie’s care. After all of her ongoing therapies, genetic tests, operations and assessments we still don’t have a diagnosis and probably never will because of the rarity of her genetic condition.

Elodie was born with brain abnormalities and has profound neurodevelopmental, physical and communication disabilities and complex medical needs including epilepsy, which impacts upon every aspect of her life. As a newborn baby, we were told she would never talk and never walk. However, at 27 months old Elodie took her first steps.

Although Elodie cannot speak, she is determined to find her own ways of getting herself heard and understood. Unfortunately this often resorts in becoming very frustrated and she finds communication extremely challenging.

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. 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 therapy 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 therapy with non-funded prices costing £500 a day. The cost isn’t sustainable meaning she won’t be able to access the regular therapy she really needs.

We want to give Elodie the best opportunity to thrive and flourish and help her the best we can with the challenges she may face. This means fundraising for Just4Children for therapies and equipment that our overstretched NHS cannot provide.

We are also fundraising for a specialist bed. Elodie’s seizures happen in her sleep and/or are triggered by tiredness, waking up and illnesses. Elodie cannot go in a typical single bed due to her epilepsy, lack of danger awareness and understanding. Despite this Elodie doesn’t qualify for a local authority funded specialist bed as she is technically mobile.

The Mascot modular bed has been recommended by Elodie’s occupational therapist and it is the best bed for Elodie’s needs. We have designed it specifically for Elodie and thought about her projected growth. However, we can also adapt it as Elodie’s needs change so we know it will be her bed for the long-term. It has been designed to make her as independent as possible and to look more like a typical child’s day bed rather than a medical bed, but retaining all the specialist and safety features. As with most special needs equipment, it’s pretty expensive with a price tag of £9,945.00. We want Elodie to be able to sleep safely, so we can sleep soundly.

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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