Step Down care – Anayah


One year old Anayah suffers from a condition that causes severe muscle weakness throughout her body, including her respiratory system. As a result she can’t breathe on her own and is connected to a ventilator 24 hours a day.

She spent the first eight months of her life in hospital and was initially referred to Richard House for step down care so that her mum, dad and home carers could be trained on how to look after her. This meant she could go home and be with her family rather than stay in hospital. This meant the world to mum Naureen.

I stayed at the hospice for five nights and during that time the nurses and taught me everything I needed to know so that we would be confident and able to care for her at home, like what medications to give her and when to give them to her. They even came to my home and helped set it up for her arrival.

Anayah now comes to Richard House regularly for planned respite. This allows her parents to spend some time together with her two brothers and to have some rest.

Naureen says

I am confident in the staff because I would never leave her if I didn’t trust them 100%. Respite is so important as it gives me the chance to have a little break and spend time with my two sons and my mother who is ill. All of the nurses are so good with Anayah, they are amazing; they help in every way you could imagine. If I have a problem they will sort it out then and there.  It’s fantastic here, Anayah loves it here and so do I.

Here’s a video that Kirsty made with Anayah about her motivation to run the London Marathon.