In May 2021 when she was 12 years old, Alyssa was diagnosed with an aggressive form of T-cell acute lymphoblastic leukaemia. T-cells are the body’s guardians – seeking out and destroying threats – but for Alyssa they had become the danger and were growing out of control.
Alyssa immediately started a course of four different types of chemotherapy at Leicester Royal Infirmary, followed by a second more intensive course, after which the search for a bone marrow donor began.
Between June and October 2021 whilst looking for a bone marrow match, Alyssa spent four weeks in hospital receiving more chemotherapy. It was during this time that the family was introduced to Spread a Smile by one of the hospital’s Play Therapists who invited her to join a group online drawing session with other children in the hospital. From that moment, Alyssa was hooked, taking part in as many Spread a Smile sessions as she could, from balloon modelling to art and magic.
As her Mum, Kiona said: “The sessions were a break from treatment and a chance to engage with other children. Alyssa was able to socialise, laugh, be herself and forget she was in hospital. Afterwards she would take what she had learnt from a session and find out more about it, sharing it all with her family. She taught me how to draw a unicorn after one of the Spread a Smile art sessions! Alyssa loved it all.”
In October 2021, Alyssa was admitted to Sheffield Children’s Hospital for a bone marrow transplant, which unfortunately was unsuccessful. At this point the family felt in complete limbo, not knowing what the future held.
“We had been discharged from hospital, but Alyssa was still in isolation and we didn’t know what to do. She couldn’t go to school or be with her friends and we didn’t know what was going to happen next. It was during this time that Alyssa started singing and piano lessons with Spread a Smile and Fairy Kiri. I can’t explain the difference they made to Alyssa and her wellbeing, bringing her so much joy during such a difficult time. She would join in with as much as possible through Spread a Smile and the sessions became such an important focus in her life.”
By this point, the only remaining treatment option was a revolutionary new type of medicine called “base editing”, which involved engineering a new type of T-cell capable of hunting down and killing Alyssa’s cancerous T-cells. In April 2022, Alyssa was admitted to Great Ormond Street Hospital (GOSH) to start a clinical trial.
Alyssa spent four months at GOSH, three and a half of those in isolation. During that time she could only see her Mum or Dad and didn’t see her brother, Liam properly at all.
“Alyssa is really close to her brother and it was perhaps hardest on him as he had to carry on his day to day life, going to school, travelling every weekend to GOSH and only being able to see Alyssa through a glass window. He wanted to keep her safe, so it was really lovely for him to be able to join in with some of her Zoom sessions with Spread a Smile. It was something they could do together.
“Spread a Smile once again made a huge difference to Alyssa as she battled her illness. She joined weekly art sessions with Fairy Kiri and a friend called Vicky who was also receiving treatment at GOSH. They loved seeing each other on Zoom and still carry on with the sessions today. Alyssa also had her hospital room window painted by one of the Spread a Smile artists and she was so chuffed that she could have Dobby from Harry Potter.
“Spread a Smile also supported me hugely and I won’t ever forget the time when thanks to this amazing charity, I was able to relax for just a little while when they organised for me to have a hand massage, haircut and a facial in hospital. Alyssa loved that!”
After a month, the family received the wonderful news that Alyssa was in remission from her cancer. She was given a second bone-marrow transplant to regrow her immune system and was initially discharged mid-August when for the first time, Doctors reported that they couldn’t see any cancerous cells.
“Once again, Spread a Smile really stepped up for us. Although Alyssa wasn’t able to fully join in at the Spread a Smile Summer party due to the risk of infection, they made such an effort to welcome us, helping to keep us separate but involved, bringing us lots of treats and surprises and even singing a special song for Alyssa. Such beautiful moments that we will treasure forever.
By December 2022, seven months after the clinical trial began, Doctors felt more confident in saying that the signs were good and it looked like treatment had been a success. The family are now planning more for the future, thinking about Alyssa returning to school and finding a bit of normality and stability. Alyssa is still a huge Spread a Smile fan.
Alyssa said, “When I was first diagnosed it was right in the middle of the Covid pandemic and everyone was kept apart. It was so hard being ill and away from my family not able to see anyone. So I loved Spread a Smile’s online group sessions as I got to meet other people who are going through similar experiences. My brother was also able to join in too which made me really happy.
“When I was in hospital in isolation and feeling really rubbish, I always had someone to talk to at Spread a Smile and they made me feel less alone. I love Fairy Kiri – she is so brilliant – always making me happy and smile. I can forget about being ill when we’re together.
“Spread a Smile are amazing! Thank you so much to everyone for helping me and really making a difference during such a horrible time.”
Alyssa’s Mum, Kiona said, “For me, it’s simple. Spread a Smile is able to do things and help Alyssa in ways that often family and medical staff can’t. They are her friend, support her and lift her up with happiness and fun.
“When you have a very unwell child, the world around you becomes small. There aren’t any ‘normal’ experiences anymore and everything is wrapped up in hospitals, illness and treatments. Spread a Smile spurs us on to do more, experience more and see that there is something else out there beyond the sickness. They provide a little bit of hope in the darkness.”
Please help ensure we can continue to support young people like Alyssa and their families by donating today. Thank you.