Our 4, nearly 5 year old son, Louis, was born with a rare genetic condition – TUBA1A. He has epilepsy, cerebral palsy and a naughty sense of humour! He suffers with painful leg spasms and has very limited mobility. Caring for Louis as he continues to grow, is becoming more and more challenging for us as parents. The home we have and love, CAN be adapted so Lou can move and roll around independently. And so, us as his parents, can meet his everyday needs.

 My family have explored all options available to us including moving house. Moving house moves the problem and there are no ready-made, disabled friendly, affordable homes. We urgently need help to make adaptations to meet Louis's needs in the house we want to remain in.

Sadly, the local authority has rejected funding due the costs of the project exceeding the statutory limit offered by Welsh government. This has devastated our family. Initial plans began in 2021 and we have waited and waited, hoping, and expecting this to be approved. We are left with no other options other than to either fundraise or borrow money.

Our home is becoming more and more unsuitable without being adapted. We cannot borrow the amount of money needed so we ask for your help to support Just4Children. Currently, the need for constant support in the home, has a detrimental effect on Louis's happiness; he is frustrated by his dependence on others; he can not access his bedroom, move around, and play like his brother and friends. By helping fund adaptations, you are helping Louis stay in a safe and happy home with our family.

 What Louis needs:

a bedroom on the ground floor which is wheelchair accessible, has enough space for independent play and for us as parents and his carers, to provide care;

a ground floor wet room with specialist bath to support him receive intimate care and eventually independent self-care in dignity;

ease of access around the home to his own space and wet room by widening doorways;

permanent and independent access to the home and garden;

space for his standing frame, wheelchair, hoists, changing tables and physio equipment;

ability to practise using his walker in accessible space at home and in the garden with a hope that one day he will be able to take his first unaided steps.

 What Louis Loves:

most of the children's content on Netflix;

football – he loves going to watch Wrexham AFC with his brother, Teddy. He is also an avid Match of the Day fan and regularly celebrates goals using Marcus Rashford's celebration;

playing outside on the grass or in his mud kitchen;

having quiet, relaxing time away from grown ups;

sensory toys particularly disco lights;

music – dance or rave music are his favourite genres;

being a 'big boy'. Doing what he wants, when he wants without being carried!

 Louis received his first self-propelling wheelchair in the summer 2023. He instantly got the hang of it – moving independently and loving the opportunities he now has. His school has the accessible spaces for him to be independent. He deserves the same independence at home. The ability to access your home, bathroom, bedroom and the outdoors should not be a privilege but a basic right regardless of affordability and government funding.

 Our family will be incredibly thankful for any help you can provide. We just want to stay in our forever home with our beautiful boy.

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