Ki Ki's Story

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Family Support Worker Shelly helped Teissy’s family in their grief. Teissy tells us about the death of her daughter Ki Ki and the support her son Kingston needed.

Ki Ki, Kingston’s little sister, was born in October 2015. Aged almost three years she became very unwell in 2018. She was diagnosed with Leigh’s disease (a progressive neurological disorder) and a severe type of scoliosis, in February 2019.

Whilst Ki Ki was seriously ill in hospital and we had this terrible diagnosis the hospital team referred us to Rainbow Trust.

We didn’t know how long Ki Ki would live. On top of the devastating news and having to learn how to look after Ki Ki being so ill, we decided to also focus on making her life the best it could possibly be and on creating memories for us all.

We wanted to make memories so we went on different holidays to enjoy as a family and Ki Ki’s personality shoe through, she was a real social butterfly. The diagnosis and situation changed us all.

Rainbow Trust Family Support Worker Shelly started supporting our whole family, but focusing on Kingston. As my partner Adam and I spent more and more time with Ki Ki we had less time with Kingston, who was just six. He needed one-to-one time, moments when he could be himself and also have fun.

Shelly would spend time with Kingston to provide an outlet; in their sessions he was able to express how he was feeling and voice his worries and concerns. We started to see a real difference in him. It was evident that Shelly’s support was very beneficial for him and made him feel special.

Shelly also took Kingston out with other siblings of very ill children. This helped him understand that he wasn’t alone and also helped him make new friends.

Shelly made us all feel at ease. She is very inviting and conversations happen naturally with her; I didn’t mind telling her how I was feeling. I didn’t mind sharing thoughts or feelings that I would not even tell my family.

There was a unique difference from other organisations that provided some support; Shelly knew the whole family and what we were all going through. Other organisations didn’t understand the whole situation. With Shelly it was different, she understood everything that we were going through. She really cared. Very quickly Shelly became our constant and stable support.

It pains me to say that in March 2020, two weeks before the country went into the first national lockdown, Ki Ki sadly died.

For us, things became very different. Relationships with people changed. On a normal school run people would avoid me, look away and pretend they hadn’t seen me.

People feel uncomfortable as they didn’t know how to react to me. They didn’t want to ask ‘Are you all right?’ because of course I wasn’t all right and I will never be. Nothing will ever be the same.

Rainbow Trust was the only organisation that supported us throughout; Kingston’s school offered some bereavement support but it wasn’t constant and it only lasted for a couple of weeks.

Kingston and Ki Ki were 14 months apart and were very close, they had a really good and special bond.

Ki Ki’s death had a big impact on Kingston. He started having night terrors, was unable to sleep and was having a really difficult time. Kingston is so considerate that he didn’t want to talk to us about what was happening with him and how he was feeling as he didn’t want to upset us. He didn’t want to worry us so he kept it all in and only shared it with Shelly.

While looking after Ki Ki Adam and I had a good routine. All this disappeared when Ki Ki died. Adam was very angry, very upset. I dealt with it in a different way. I felt sad and depressed. I was mad at Adam for shutting me out. Shelly also helped with these feelings. Shelly explained that there’s no right or wrong way to grieve. His way of grieving was just as valid as mine.

18 months after Ki Ki died I gave birth to my daughter Khailani. She is 14 weeks old and Kingston is really good with her but, as he has gone through the trauma of losing Ki Ki, he worries about Khailani.

Shelly’s help felt like someone from outside our family cares and wants to help us get through this really difficult time, when we did not know how to deal with it all.

Losing a child is the worst experience a parent can go through and Shelly helped me to accept my loss and to grieve. Shelly gave Kingston the space he needed to learn to live with the pain of losing his little sister.

Please donate today, so we can continue to support more families, like Ki Ki's.

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£5 could provide bereavement support to help a family cope with the death of a child.

Continued support for as long as a family needs us

Continued support for as long as a family needs us

Hearing your child has a life-threatening illness is the hardest thing any parent can experience - but they don’t have to go through it alone.

We provide bespoke continued support to families, helping to negotiate life after a diagnosis. We offer practical and emotional support to the whole family, through their darkest times.

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