Alfie

In August 2022, a normal night playing at home turned into tragedy for three-year-old Alfie Baker.

Alfie, now five, was playing with his brother when he fell off the sofa – something he had done many times before. But this fall was different. This fall caused irreversible damage to Alfie’s spine, which has left him paralysed from the neck down.

For Alfie, his parents Sarah and Sonny, and siblings, Oscar and Charlotte, their world was turned upside down within seconds.

“It is all such a blur as it all happened so fast. One minute he was playing at home and the next he was in intensive care,” said Sarah. “Playing on the sofa was something he had done a million times before. It was absolutely nothing out of the ordinary. I heard a bang from the kitchen and went to the living room and Alfie was lying on the floor. I picked him up and he seemed fine.

“He then followed me back to the kitchen and was crying. I thought he may have banged his head so I gave him Calpol and I realised he wasn’t moving his arms. He then stumbled and fell over and couldn’t move his arms or legs. It was terrifying.”

Alfie was taken straight to the hospital where he was admitted to the Paediatric Intensive Care Unit with swelling to his spinal cord. He was sedated and intubated. “His heart rate kept dipping dangerously low and he flatlined a couple of times,” said Sarah. “It was so frightening. Alfie was tested for everything and so much blood was taken, he had to have a blood transfusion.”

Alfie was eventually diagnosed with Fibrocartilaginous Embolism – an extremely rare condition caused by the fall. Doctors believe a tiny shard of a disc came away, puncturing his spinal cord. He was also fitted with a pacemaker, which reduced his dependency on heart medication, as well as having a tracheostomy.

“All of this had happened within a week and I couldn’t believe it,” said Sarah. “There are no words to describe it, it was something you see on a TV programme.

“When we were given his diagnosis, we were told there was no cure and we would just have to wait and see what happens. At one point, we didn’t even know if he was going to make it or not.”

Just before Christmas 2022, and after seven months in hospital, Alfie was medically stable to go home but the family’s house wasn’t suitable to accommodate Alfie’s new dependent needs.

In a desperate time for the family, Stepdown Care – a care package funded by the NHS Nottingham and Nottinghamshire Integrated Care Board (ICB) to support the hospital to home transition – was provided for Alfie at Rainbows.

This funding enabled Alfie to stay at our hospice for seven months until he and his family were able to move to their new home.

Alfie no longer requires Stepdown Care so the ICB funding was stopped. But as Alfie’s condition is life-limiting, he now meets the criteria of our charity.

“For our other children, Oscar, who was six at the time of Alfie’s accident, and Charlotte, who was one at the time, life was incredibly hard,” said Sarah. “Our Family was completely torn apart. I was in hospital with Alfie and Sonny was at home with the other two children.

“But when we came to Rainbows, it was fantastic. Everyone loved Rainbows. I stayed in the week with Alfie and every weekend, the rest of the family came. To be together again as a family was absolutely amazing.

“Everyone at Rainbows was so nice and everyone made us feel at home. It is just such a supportive place and if I ever needed to talk to someone, there was always someone around. Everyone knew Alfie so well. Rainbows made such a difference to us. It brought our family back together.

“Alfie had gone through so much so quickly that I had to do so much medical training. At Rainbows, they helped me to get to grips with all of this and I also felt I could be a mum again.

“Alfie loves Rainbows, he gets treated like a little celebrity. We have made so many special memories. At Rainbows we all went swimming for the first time as a family. It required a lot of planning and a lot of staff, but Rainbows facilitated it.

“There is so much uncertainty around his condition and there are hardly any cases in the world, we don’t know what the future holds or what is going to happen and still now, I have no words to describe it. We try not to dwell on it and take each day as it comes and make each day as fun as possible.”