Kayden's Story

Kayden at Rainbows Hospice for Children and Young People

Kayden is a fighter. In his young life, he has battled cancer, suffered a cardiac arrest and been the victim of Septicaemia.

He now has profound brain damage and although Kayden is “perfect in every way”, his mum, Emma, has grieved for the life her son can never have. 

Life is incredibly tough for single parent Emma, who was 17 when Kayden was born. She is now supported by Rainbows, a place Kayden loves to go and can enjoy activities like any other 11-year-old child. 

“Rainbows is such a wonderful place and everyone there has helped me and Kayden so much,” said Emma. “Rainbows cares for us both in so many different ways and we couldn’t imagine a world without Rainbows. 

“We had spent 27 weeks in hospital when we were introduced to Rainbows. We arrived by ambulance and it was such a relief to get out of the hospital and go somewhere else. At first it was really daunting as I had never heard of a hospice and I didn’t know what to expect. But it was the complete opposite. Kayden could join in with things I never thought he would ever be able to do. Rainbows was just wonderful.”

Kayden underwent bowel surgery when he was just one-day-old. Six weeks later he was in theatre again. Kayden recovered well and life resumed normally but when he was eight-months-old, Kayden suffered a seizure.

“Gradually the seizures became more often so at 18-months-old, Kayden underwent thorough testing,” said Emma. “That is when I was told it was Acute Lymphoblastic Leukaemia. I just couldn’t believe what I was hearing. At the time, I thought Kayden was just being investigated for something not too serious and when I heard Leukaemia, I just didn’t know how to feel, my whole world stopped right there. It was awful and it was all so fast. We were rushed to the hospital from the doctors; it was heart-breaking.”

Kayden had intense chemotherapy for six months and a year after his diagnosis, he was in hospital for scans when he suddenly became very ill, very quickly. He was taken to the High Dependency Unit where he suffered a cardiac arrest. 

“Kayden spent four weeks in ICU where he developed a nasty infection and Septicaemia took hold of his body,” said Emma. “Doctors didn’t have much hope for Kayden, however as always, he proved everyone wrong and his strength shined through.”

Kayden was left with brain damage and unable to do basic tasks such as walking, sitting, feeding or talking. He also has Epilepsy and Osteoporosis and had a Tracheostomy, which was reversed in 2012.

“Over the years we have seen small improvements which mean the world to me. He can smile and laugh and is a very happy little boy,” said Emma. “One of the best things is that since 2014, he has been cancer free. But Kayden is still very poorly and he really needs the care he gets from Rainbows.

“This has been a big learning curve for me, I left hospital with a completely different child to the one I went in with. But we have had a lot of support from family and friends and Rainbows. I know if I am struggling with anything, my Family Support worker is always at the end of the phone. 

“Rainbows is somewhere we can go and enjoy together. He loves swimming and that is incredible. I never thought he would be able to swim. He just loves the pool and I go in sometimes. I have also spent time in the pool alone and had massages. My meals are made and there is no stress or worry.”
 

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