Riley's story

Eleven-year-old Riley is a cheeky, happy, and sweet boy who loves long walks, messy play, socialising and watching TV.

Not long after Riley was born, he became unwell with a chest infection and was soon diagnosed with an identified but unnamed genetic neurological condition that means he is non-verbal, non-mobile, nil by mouth, epileptic, and developmentally delayed. A year later, his brother Stanley was born with the same condition.

His mother, Shailza, explained that the condition runs in the family, however it only affects males. Both her uncle, and her aunt’s son died of the same cause.

When she was pregnant with Stanley, doctors were not able test him for the condition, and even once he was born, Shailza put off getting Stanley tested because she wanted to ‘live in hope for a little longer.’

Stanley later got tested and tests confirmed that he too was affected by the condition.

Shailza describes the first two or three years caring for both Stanley and Riley as ‘very dark’.

‘I was just floating in it. I don’t even know how I did it or what I did. It’s not a nice feeling. I was heartbroken as a mother.’

As the condition only affects boys, Shailza often questioned why both of her children had to be boys.

‘Acceptance was hard because I kept asking why both? Why is one of them not a girl?’

It wasn’t until Riley was three years old that Shailza started looking for help.

‘After two, three years of aged, I accepted it and I started looking for help, whatever help I could get. I started meeting other parents, learning more stuff, and just start making the most of it.’

Relating to other people who do not have a seriously ill child is hard for Shailza and explains that sometimes it’s hard to keep going.

Stanley died in October 2022, at eight-years-old, after spending four months in hospital before being moved to a hospice. Shailza describes Stanley as ‘dying peacefully in her arms.’

‘When Stanley was in hospital and his body was lying on that bed, even though he was still breathing, I knew he wasn’t there anymore because his cheekiness, his smiles, and his demands had gone.’

Rainbow Trust began supporting Shailza and her family in 2016, and Jo has been their Family Support Worker ever since. Although the kind of support Jo provides has changed over the years, her support has always been centred around Shailza and the help that she needs. Originally, she provided transport support for the family and took them swimming and for dog walks. Now she plays with and reads to Riley, and provides emotional support for Shaliza. Jo gives Shaliza the chance to put herself first and talk, in a friendly and non-clinical environment, to someone who knows and understands her situation.

‘I have lots of people around me for clinical help from hospitals, but Rainbow Trust help is different. It’s mainly centred on me actually. It means I can offload sometimes or go for a nice long walk and talk. I hate therapy and stuff, it’s not my thing. I prefer just to chat with someone, and that’s what I do with Jo.’

Jo has also supported Shailza while Riley has been in hospital, spending time with her to give a chance to talk about how she’s feeling. Because Jo has supported the family for a number of years, she understands their situation and Shailza appreciates Jo’s support without having to explain everything to her.

After Stanley’s death, Shaliza wanted to walk to where he was buried but didn’t want to go alone. Jo accompanied her and listened to her talk about her memories of Stanley.

‘I wanted to walk to where Stanley’s buried, but I didn’t want to go alone. So, Jo came with me, and we just talked about Stanley and how he was in the hospital and what happened to him. I repeated the same talk over and over, just for my own sake.’

After Stanley’s death, Riley was very clingy with Shailza, and also became quite withdrawn.

‘I explained to Riley that Stanley had got his wings. And when someone grows their wings, we can’t see them anymore. It took Riley five or six months to come out of that time, before he is happier and content again.’

But for Shailza, having the support of Jo has made a big impact because of its non-clinical approach.

Coping with the uncertainty of the future can be hard for Shailza, as she ultimately knows her time with Riley will be cut short. But Jo’s support means Shailza knows there is always someone there willing to listen to her worries.

‘I don’t know the future, nobody knows. But I know someone is there if I need to talk, and if I’m really overwhelmed. I know that if I’m really lost, or lose my mind, she will refer me to somebody. And if she is worried about me, she will help.’

‘It helps me to know that if I’m falling, someone will catch me’.

Shailza has a limited support network in the UK, so for her, Jo has become like a friend she can rely on:

‘I don’t really have any friends or any family in this country, so having somebody there to talk to and somebody who says ‘I’m here for you’ is helpful. I know we can go for a walk, or for a coffee, whatever we like. We’ve arranged time to go to an Indian temple in the past as well. That was good for me, because I have nobody else who’s doing that.’

Due to her background, Shailza explains that she automatically puts herself second, and everything she does, she does for her family.

‘My boys are my everything – I don’t matter. I was doing everything for my boys, and I will do everything for Riley now. I’m a full-time carer, nurse, mum, social worker, personal assistant – everything.’

Despite how busy life is for the family, Shailza has ambitions to travel and for her and Riley to see the world.

‘I want to travel – I took Riley to India last year, that was hard work, but I did it. I love to travel, and I want to see other countries, and I’d love to do this with Riley.’

‘I want to go places I can go with him. So, in the future, I want to take him to Disneyland Paris.’

Jo’s support means Shailza has someone to help her in such isolating, difficult and challenging circumstances. Her support is ongoing for Riley and Shailza.