In March 2018 Kaiya was diagnosed with high risk leukaemia and immediately admitted to Great Ormond Street Hospital (GOSH) for chemotherapy whilst the search for a bone marrow donor began.
As it was over the Easter bank holiday, the hospital was very quiet and it was during this time that Spread a Smile first met Kaiya and her family.
Kaiya’s Mum Annu said, “It was so strange and scary all of a sudden being in hospital with our world turned upside down. Meeting Spread a Smile during that time made a huge difference. A fairy came and gave Kaiya some activities to do, talking to her and laughing with her. They treated her like a person – a child – seeing more than her illness.”
After spending an initial three and a half weeks at GOSH, Kaiya returned frequently to the hospital for additional treatment and she loved seeing the Spread a Smile entertainers and joining in as many activities as she could.
When Kaiya was admitted again for a number of months for her bone marrow transplant, she spent most of it in isolation. During this time, Kaiya would look forward to visits from Spread a Smile:
Annu said, “Kaiya had visits from fairies, magicians, singers and even an artist who drew pictures of Kaiya’s favourite Disney princesses for her. She loved them all, but particularly the magicians and singing fairies. They made her feel so special and important. She felt like the ‘normal’ Kaiya, not the ‘cancer’ Kaiya. She was able to have fun in the moment, talk about anything she wanted and everyone was so kind to her.
She would always remember and talk about who she’d met and what they’d done together. Being in isolation is like groundhog day every day, but Spread a Smile was like a breath of fresh air. Seeing Kaiya’s eyes and face light up when the team arrived was just brilliant.”
Because of the side effects of her treatment, Kaiya would sometimes feel very upset or angry and she didn’t understand why her emotions could be so extreme.
“I remember Laura from Spread a Smile spending time talking gently with Kaiya about what was happening to her and how she felt. Laura had such a lovely kind way of engaging with her. After that, Kaiya started talking a lot about how other children on the wards might be feeling about and during their treatment and that she wanted to try and help them understand and manage their feelings. So she decided to write a book!
“Kaiya would sit with me whilst we were in isolation telling me what she wanted me to write down and thinking about what she found helpful and how to cope better with difficult feelings surrounding treatment and hospitalisation.”
During lockdown Annu pulled all of Kaiya’s thoughts together, adding in some things that she also felt would be useful. This has since led to Kaiya’s book -“My Brave Journey – A personal journal about what makes me special”.
Kaiya sadly passed away in 2019 and her book is a lasting and very special tribute to a courageous and caring girl. Upon completing Kaiya’s book, her family donated copies to Spread a Smile to be delivered to children undergoing treatment at GOSH.
Annu, Kaiya’s Mum said “Spread a Smile made Kaiya’s last Christmas so special, when she was so weak that she didn’t have enough energy to open her presents. You managed to bring her beautiful smile back for that moment. We are so proud of her and hope her book will help other children in hospital.”
Please help ensure we can continue to support children like Kaiya and their families by donating today. Thank you.