Ciara was born with Down Syndrome alongside additional heart complications which led to heart surgery at 18 months old. She was also hospitalised on several occasions for chest infections in those early years of life. Then in November 2016, after battling several viruses, Ciara started limping. Doctors initially treated her for hip infections, but three months later in early 2019, it was confirmed that Ciara had Acute Lymphoblastic Leukaemia. She spent three months in hospital undergoing intensive chemotherapy and when she didn’t reach remission, another six months gruelling treatment followed. Ciara was unable to walk, was fed via a nasogastric tube and spent her days in pain.
Ciara underwent three years of chemotherapy and steroid treatment in total, including weeks in PICU on life support for an infection. During this time, she also developed acute mucositis – a condition characterised by pain and inflammation of the body’s mucous membrane and a side effect commonly associated with treatment for cancer. Her reaction to treatment was complicated as people with Down Syndrome find it harder to clear some chemotherapies from the body (methotrexate). The steroids used in treatment caused Ciara to become steroid dependent and have stunted hip growth.
Isolation and medical trauma seriously affected Ciara’s mental health. She was unable to go to school regularly for two years and then this led into covid lockdown.
Although Ciara has been off treatment for leukaemia since September 2019, unfortunately some long-term effects of the treatment still cause her issues. This combined with Down Syndrome means that Ciara still has to attend hospital and has low immunity to all the winter bugs. In January 2020 she developed a cholesteatoma and needed several operations on her ear to try and restore some hearing. Following her end of treatment party in February 2020, Ciara caught long covid whilst in hospital.
Ciara’s Mum Deborah said: “Ciara is a fighter and she loves life. She has a wonderful repertoire of slapstick comedy; her smile warms any heart and she likes to direct Broadway musicals using any willing performers. She has needed to extend her Makaton vocabulary since being deaf and this is just one-way Spread a Smile comes into life for her.”
Spread a Smile first met Ciara at King’s College Hospital in June 2019 after she had finished her cancer treatment. Initially Ciara started to enjoy regular virtual sessions with Mr Magic and Oscar (Mr Magic’s puppet) and absolutely loved them. Mr Magic and Oscar become her friends and to her they were also famous since they were on ‘TV’… Smile TV (Spread a Smile’s video platform).
“Ciara then joined in lots of Spread a Smile’s virtual events and workshops including biscuit decorating, arts and craft sessions, and the weekly Makaton sessions (which she still does). Now she’s older her favourite zoom session was learning how to do her make-up and receiving the make-up for the session in the post.
“We’re also proud to have celebrated Ciara’s birthday with her through bespoke online Smile Parties. The summer party organised by the charity was the first time Ciara met the Spread a Smile team in person. It was a really special moment for all of us.
“Spread a Smile has really helped with Ciara’s recovery from illness. Their sessions have felt like therapy for both Ciara and myself as they are something special to join in with. It’s been a real treat for her and for me to see her actually enjoying herself. Although we have only met Spread a Smile once in person, the online Zoom sessions have been vital for Ciara as she finds it hard to leave the house and is anxious around other kids. Having regular Zoom sessions and getting to know a few of the Spread a Smile fairies and staff has been a God-send for our neurodivergent young person.
“We now use Smile TV a lot, and seeing the entertainers in person is a bit like meeting her idols. She loves them all! Ciara has also met Santa through Spread a Smile and attended both the Chanukah and Eid parties. I’m Jewish, but we haven’t got a reason for attending Eid… Ciara just wanted a party! I think the box of goodies Spread a Smile sent at Christmas and the make-up have been her absolute highlights – although the face painting workshop was amazing too.
“For me, the one-to-ones with Ian have been particularly special as they have given me a chance to see Ciara laugh her head off. It’s a wonderful thing for a Mum to see when your child is unwell. The fact that she gets to see other children who are ill has also helped her and it’s been great for me to be able to talk to people like Vanessa (one of the Spread a Smile’s co-founders) who really get how awful this journey is. Thank you Spread a Smile for being there when we needed you most.”
Please help ensure we can continue to support children like Ciara and their families by donating today. Thank you.