Nora's adapted bungalow

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Nora Walter

Rustington, West Sussex

Our bungalow needs extensive structural works and rearranging of internal walls to provide a bedroom and bathroom that will suit our daughter's needs into adulthood, and to provide space for her to move around the house and be involved in day to day family life.

Nora was born with a complex form of epilepsy that has left her with multiple complex needs. She is non-mobile, non-verbal, fed via a tube into her tummy and experiences multiple daily seizures.

Nora is outgrowing her bed, and her current bedroom does not have space for a larger bed. We also do not have room to safely hoist her into her different seating and standing equipment. Narrow hallways and doorways make it difficult to get around the house, and walls and doors have been damaged as a result.

Our bathroom is very narrow and with only a standard bath. There is no room for any hoisting equipment and it is not safe to lift Nora in or out of the bath.

Nora has no step-free access into the house so has to be manoeuvred over steps and door ledges and around the back of the house. Works will also provide a new ramp to a new wider front door and hallway.

When we moved into our bungalow we expected we would need a small extension in the future to provide a bathroom for Nora. However as her needs have changed she requires more equipment and more space, and this has meant more works are needed.

These include:

A new single-storey extension for a bathroom with height adjustable bath and space for a WC chair

refurbished master bedroom for Nora, with hoist between rooms

Relocating parents into a new ground floor bedroom

Relocating Nora's brother into a new loft bedroom

demolishing a conservatory (currently with a step into it) and providing level access throughout the house, and into the garden,

Removing and relocating walls to give wider hallways, doorways and a combined kitchen / dining / family space

We have been accepted for DFG, but the overall cost of the works is many times this amount. We have taken as much as we can from our mortgage but this still leaves us short by a long way. Some of the cost is what any family would pay for an extension, but the extra space and equipment we need pushes the costs far above the average cost for this kind of work.

Nora loves the things you might expect of a 7-year-old girl: playing with her toys, listening to music (especially Disney and showtunes), long soaks in the bath and getting her hair done. And of course, adoring her big brother! She's a bubbly, content and utterly adorable little girl.

But Nora also needs a level of support you'd never expect for a 7 year-old. Her complex epilepsy has left her non-verbal; unable to walk, sit or stand; seriously visually impaired; prone to chronic seizures and serious chest infections; fed through a tube into her tummy; and utterly dependent on others for every part of her day.

Nora needs extensive changes made to her home if she is to continue to be looked after here. The bungalow we live in needs a new bathroom extension built, bedrooms knocked together, wider doorways and hallways, and the roof rebuilt to accommodate the changes. Her brother has to have a new bedroom too as his gets swallowed up in the changes - they can't share as Nora uses nighttime breathing support and has parents/nurses in her several times each night.

We've been granted £30,000 from the council but even this doesn't go all the way – for example, Nora's specialist height-adjustable bath alone will cost £13,000!

We've put every spare penny – and then some – into the costs, and family have been incredibly generous in helping us get started. But even then we are short of what we need.

Funding towards specific items – a bath, new flooring and lighting – will help us give Nora the home she needs.

Why are the works needed? Nora is completely dependent on us as parent/carers for all her daily needs. She is already too big for us to be able to give her baths in our family bathroom, and she is unable to use a standing shower. She really needs a bigger bed and fitted hoist so we can lift her safely between her bed, wheelchair and - once built - her bathroom. We need space for her wheelchair to move around the house, especially looking ahead to when she is a teenager and young adult. Wouldn't it be better to move house? The reality is that any house we move into will need extensive works carried out. Some modern houses are being built to be more accessible and adaptable, but supply of these is incredibly limited. Our bungalow is near family who can help when Nora is poorly, or with day-to-day family life when things are getting overwhelming. We are located close to both children's schools, Hospitals and surgeries which makes life far more manageable. So moving house really isn't an option for us. Do you get any funding from the government? Local councils provide up to £30,000 through the Disabled Facilities Grant, where adaptations specifically benefit disabled children. This is really welcome and helps towards costs, but construction costs around the country have massively increased since this was last reviewed. For example, Nora's new bedroom and bathroom (including a specialist bath) cost in excess of £55,000, plus the costs of making the rest of the house more accessible. The full payment is only given once all the works are completed in full. What will donations be spent on? Donations received will go towards these specific items:

£16,000 - height-adjustable bath
£3,000 - widening hallways
£4,140 - widening entrances into the house
£1,390 - Widening internal doorways
£1,120 - removing load-bearing wall between lounge & kitchen
£4,545 - rebuilding conservatory floor to provide level access into lounge and garden
£38,180 - new accessible bathroom and refurbished main bedroom
£11,980 - moving Nora's brother's bedroom into the loft
£1,750 - new ramp to the front door

What happens if you can't raise the money? Areas of the house will stay unfinished. Nora won't be able to use a bath, and money will be redirected from things like finishing the family room, bathroom and flooring. We might not be able to move back in and won't be eligible to receive the full Disabled Facilities Grant from the council.

No information.

Fundraising target

£55,000

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David Walter

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