Our eldest daughter, Ella was born with a rare genetic disorder called Rett Syndrome. The condition means that she has scoliosis and kyphosis of the spine, and walks with an unsteady ataxic gait. Although she can walk short distances indoors with the support of a carer, she is dependent on a wheelchair to go any significant distance or to access the community. Ella has other challenges – she has a diagnosis of epilepsy, is unable to speak, is doubly incontinent, has no purposeful hand use and can’t transfer between positions on her own (like from standing to sitting). There is no cure for Retts and it is a life shortening condition.

Ella is a termly residential student at Treloar College where she is cared for by a wonderful team of highly specialist therapists, carers and teachers. As part of her intensive physiotherapy program, Ella has enjoyed cycling on a cycling machine (Motomed) and has temporary use of a trike which allows her to cycle round the flat wide corridors and paths at college (with guidance from her carers). This temporary loan limits the amount of triking Ella can do, hence we would like to raise the funds to purchase Ella her own trike. A suitable trike would cost £3,000 of which we have raised £250 leaving a shortfall of £2,750. There is no council funding available for the equipment.

A trike would make a significant difference to Ella. It would allow her to get about under her own steam, which would in turn help maintain her fitness, mobility and lower leg strength and would improve her mental health, confidence and sense of independence.

Over the last few years, with the help of kind friends and neighbours, we have done quite a bit of fundraising for Ella. We raised over £10,000 to buy her a specialist eye gaze machine which allowed her to communicate with her family and friends. Then, at significant legal cost, we took Hampshire County Council to SENDIST Tribunal to argue the case for Ella to have a special needs place at Treloar School – and won. Ella is now thriving at Treloar College as she catches up on her education. Since the tribunal, we have self-funded major renovations to our old bungalow to turn it into an accessible home with all the special equipment and facilities Ella needs at home – but the renovations have consumed our life savings. Since then Ella’s Mum was diagnosed with ovarian cancer and sadly passed away in early May 2025, so we can’t fund raise like we have done in the past, hence we are seeking donations.

Thank you for reading this far. We would be so grateful if you could support Ella in any way.