Rae's Story

Rae and her mum at Rainbows Hospice for Children and Young People

We have always loved Rainbows, it is so friendly and welcoming. We count down the weeks until the next stay. For me, it’s knowing I am going to get a full night’s sleep and for Rae, it’s a holiday.

Tragically when Rae was nine-months-old, her father was killed in an attack. He was just 34. Rae was my fourth child and I went in to robotic mode. I believe that if that hadn’t have happened, I may have picked up on Rae’s condition sooner.

But I started noticing the small things. She wasn’t sitting, crawling or climbing. One day, I realised she wasn’t pushing with her legs. We were referred to Great Ormond Street Hospital and three days before her second birthday, Rae was diagnosed with spinal muscular atrophy, a muscle wasting disease.

It felt like I had fallen into a tunnel. Everything seemed hollow. We were travelling on the tube and it was rush hour but everything just seemed so quiet. I had to tell everyone that Rae was life-limited, which was really hard. I felt like it was another stage of grieving. 

We lived in Essex and we were offered a place at a local children’s hospice. At first, I flatly refused to go. In my head, hospices were a place to go to die. The moment I accepted the hospice was when I accepted Rae’s condition. Before that, we had shielded ourselves in a little bubble. 

When we moved to Lincolnshire, we had no issues coming to Rainbows and we have never looked back. 

At Rainbows, Rae, who is now 12, just loves the Hydrotherapy Pool and she loves going in The Den to play on the computers. For her, Rainbows is also a place where she doesn’t feel like an outsider. 

Generally, Rae doesn’t like going out, she says she is in the way as people try to get around her big wheelchair as well as staring. For a parent of a disabled child, thank heavens for places like Rainbows. Without the hospice we have nothing to look forward to. 

I am entrusting the health and care of my child in the care of someone else and I am happy to leave Rae there knowing she is going to be very, very well looked after.

It is the little things you don’t think about. I can’t pop to the shop. Even going out in the garden is hard because Rae can’t move herself. We used to have Walkie Talkies but she now can’t push the buttons. She needs to be able to get hold of me at all times. 

I have to get up throughout the night to turn her, so being at Rainbows is respite for both of us. It is very hard work looking after a disabled child, you go in to sleep deprivation mode. 

But Rae is absolutely fabulous. She is a cheeky, happy and funny girl. So what if she isn’t going to walk? She is unique. 

Rae has always been really clever; she just knows how to do things. When she started primary school, they said her vocabulary was very advanced.

Rae is amazing. Every day I am thankful for her and every day we are thankful for Rainbows.

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