Emani is a happy 14-year-old boy that loves life, despite his multiple disabilities, he is engaging and cheeky, a true joy to be around. He suffers from Cerebral Palsy, Epilepsy and is quadriplegic. He has increased spasms; his severe spasticity is managed by an Intrathecal baclofen (ITB) pump in his abdomen. He has significant hearing, sight loss and no speech, prone to choking and difficulty regulating his temperature.

Emani now sleeps downstairs in the front living room, I sleep in the adjoining room. He needs assistance with every aspect of his life, constant monitoring day and night. Emani’s bariatric bed sits in the middle of the room and takes up a significant amount of space, there is little room for his large pieces of equipment. He has not been able to access the bathroom or the kitchen for over a decade. We rely on the rare visit to the Hospice for a bath, or when possible a quick shower after Hydrotherapy at school. Access to the garden, in and out of the house is incredibly unsafe, quite dangerous.

The work required to make our home accessible and more inclusive for Emani is difficult because there are many changes in level from one room to another. We need to convert the existing garage or rebuild it completely to create a downstairs bathroom and increase his bedroom space. In addition, provide safe access via a small internal platform lift to the kitchen and garden.

Emani has managed to defy the odds; he continues to enjoy all aspects of life and participates in as many activities as possible. Unfortunately, he is confined to two rooms and access to the small family room requires lifting him in his wheelchair. Emani’s ultimate wish is to have a relaxing bath, a daily shower and cooking in the kitchen. In addition, experience his love of bumpy motion and movement, the breeze in his face, rain drops on his cheeks, whilst being pushed in his wheelchair or to ride a customised bicycle (once found), around the garden.

The pressure is on to complete the adaptions, he is due an important operation in 2022. It would be a huge relief for his post-operative care to take place in an environment that is safe and suitable to optimise his recovery.