Austin & Annabelle
Born with chronic kidney disease, six-year-old Austin has spent his whole life in and out of Great Ormond Street Hospital (GOSH). However, in early 2020, a transplant became necessary. But two weeks before the operation was scheduled, all living donor transplants were halted as the nation went into lockdown at the start of the Covid-19 pandemic. The next four months caused an unimaginable strain on the lives of Austin, his twin sister Annabelle, and their parents, who shielded at home. Austin and Annabelle were kept from being with their reception classmates who had returned to school towards the end of term, losing out on essential parts of their learning and development. When he finally received the surgery four months after originally intended, so much about hospitals had changed.
Austin’s mother, Donna, said, “It was heartbreaking to see children confined to their beds and playrooms closed. There was nothing to distract Austin from his illness and treatment.”
However, all this changed when a GOSH play specialist recommended Spread a Smile’s services. Smile TV is the charity’s 24/7 entertainment channel, where children can enjoy a host of our fun and engaging recorded videos from our entertainers and celebrities. This facilitated a vital distraction for Austin. He subsequently joined virtual arts and crafts sessions and a visit to Santa’s Grotto, reconnecting him with the outside world as he continued to shield for months after his surgery.
“Austin had gone inside of himself during the trauma of his transplant journey, but Spread a Smile’s presence dramatically improved his wellbeing and returned him to the “sunny kid” we know him to be. You also included Annabelle in all of your activities. Siblings often feel left out, so everything that linked them and gave them a shared experience was invaluable. There have been so many positive moments for Austin in the midst of more difficult ones thanks to Spread a Smile.” Donna
In September 2020, at the age of nine, Sophie was diagnosed with anaplastic rhabdomyosarcoma, an extremely rare form of cancer that needs aggressive chemotherapy to fight. She had to immediately endure a seven-hour operation to remove her tumour, and nine gruelling rounds of chemotherapy.
In late December, Sophie and her mum, Charlotte, moved to London for seven weeks so that Sophie could have radiotherapy treatment at UCLH. It was here that Sophie met Spread a Smile. Her first introduction to the charity was just before Christmas, when she joined our virtual Santa’s Grotto.
“Spread a Smile really lives up to its name – it’s exactly what you do. On days when Sophie couldn’t lift her head up and really couldn’t face doing anything if she knew she had a visit she’d make sure she was ready for the session. It was the only thing she wanted to do. She loves art and the art sessions were such a boost for her. They were really the only thing that would put a smile on her face, and she’d be happy for the rest of the day.”
Spread a Smile’s presence in Sophie’s life during an unimaginably difficult time was vital in supporting her through long and repeated hospital stays, and gave her something to look forward to. At a time when children are feeling isolated, anxious and as if time moves slowly, Spread a Smile’s visits provide rare moments of joy and laughter amidst the mundanity of being in hospital.
Sophie enjoyed weekly art sessions with her sisters, which allowed her to enjoy an activity with her siblings, who she may have spent long periods of time apart from during hospital stays. It also made the siblings feel included, as they often spend considerable periods of time away from each other.
“The whole family’s outlook changed since Sophie’s diagnosis. Sophie’s prognosis has a 30% chance of survival over five years. We are now living by the mantra of ‘live for now’ – never put off the things you want to do. The impact on the family has been huge, but Spread a Smile’s presence in our lives has provided us with much-needed moments of happiness, relief and escapism.” Charlotte
Sophie passed away in September, 2021.
When Jacob first fell ill at 18 months old, his mum, Emily, took him to A&E as a precaution. Unfortunately, what started as a high temperature led to an extended hospital visit and a vast number of tests in which doctors tried to understand what was wrong. Jacob went through lumber punctures, CT scans, blood and fluid tests, but still doctors struggled to find an answer for his condition.
Eventually, after having been moved to Great Ormond Street Hospital (GOSH), doctors diagnosed Hemophagocytic Lymphohistiocytosis (HLH). As a doctor told Emily at the time, “there’s more chance of winning the lottery than being diagnosed with HLH”. The only treatment for this condition is chemotherapy and a bone marrow transplant.
They immediately started to look for a bone marrow donor and Jacob had a transplant in March 2019. He was then kept in isolation on Fox ward at GOSH for three months. When he eventually came home, he was still dealing with complications such as Haemolytic Anaemia, which meant he returned to the hospital often. This continued throughout 2020 and Jacob spent so much time in hospital and was reliant on blood transfusions and steroids and even had sepsis. Doctors decided at this point that he needed a second bone marrow transplant to try to improve his condition.
The transplant eventually happened around Christmas 2021. Jacob spent another two months in isolation in hospital and has been living with post-transplant complications ever since. He is still very much in isolation at home until his condition improves and Jacob and Emily still go into hospital around once a month.
We first met Jacob at GOSH when he was 18 months old when we would come and sing with him. As Emily said, “He was a baby on the bed and he’d been in hospital for 10 weeks. Someone from Spread a Smile came in to sing with him and it really brightened his day. After that he would get out of bed and walk down the corridor on Lion ward. We also did magic which helped to build his confidence.
“The virtual visits were also so important. We could never do baby classes or groups so Spread a Smile magic, art, singing and dancing kept him entertained. You have been supporting us now for four years. He even did a Lola’s cupcake decorating session – he was so ill that day but it got him out of bed to do an activity and put a huge smile on his face.”
At one point, Jacob was unable to leave his hospital room for 70 days, so the ability to bring some creativity and colour to his space was vital. That’s why we decorated the windows in his room. He gave us very exact instructions on what he wanted his window to look like, which involved his favourite characters; Sooty and Sweep riding on his favourite train. He had brought all the characters from home to make sure we got the drawing just right. We did the same for Jacob and others on Fox ward over Christmas as well.
Emily said that Jacob was so excited to come to our summer party in August 2022. This was only the second party he has been to, after he came to one of our events last year. Now being five years old, and having not experienced school or nursery, the relationships that Jacob has with our entertainers, staff and his medical team are incredibly important.
Getting to know Jacob and Emily has been wonderful, and being able to make a difference in their lives has been a real privilege. We’re excited to see Jacob again and hopefully host him at more parties to come.
Emily said, “Spread a Smile is so important to my family. Even at Christmas you sent a box of goodies. Things like that make such a difference when your child is going through such a hard time and your child is so seriously sick. There are no other organisations out there that provide the entertainment that you guys do.”
At the age of four, Lydia was diagnosed with Multiple Endocrine Neoplasia Type 1, an extremely rare disorder that causes tumours in glands and parts of the small intestine and stomach. At 12 years old, she was diagnosed with Metastatic Neuroendocrine Cancer, which had progressed at an unexpected rate. This has meant that Lydia has had to endure multiple invasive surgeries to remove tumours, daily medication and ongoing hospital treatment to control the spread of the tumours in her liver. One of her most recent medical treatments involved a dose of radiation so intense that she has to remain in her hospital room alone behind lead lined doors, to prevent any radiation contamination.
Lydia’s diagnosis, treatment and long and repeated hospital stays have dominated her life. She’s missed so much of her young life and so much of what other teenagers take for granted. The need to be isolated during the Covid-19 pandemic has further impacted her feelings of separation and isolation. However, meeting Spread a Smile has made a positive difference for Lydia and her family. Our in-person and virtual visits have provided much needed interactions, activities and peer support that has helped transform her emotional wellbeing.
“Pain and treatment has really upsetting for Lydia, and consequently, me. When your child doesn’t feel well and they are very vulnerable and you can’t hug them, it is the hardest thing. It goes completely against a mother’s natural instincts. But this all the it changed Spread a Smile visited. Magicians doing magic tricks, fairies singing and artists face painting with glitter and gems – it brightened up our day. They lifted Lydia’s mood and gave us something else to think and talk about. During her time in hospital, in isolation and when recovering at home, you have provided Lydia with many vital distractions. You have been a lifeline to both Lydia and her brother, Samuel, during such difficult times. When you have a child going through cancer treatment, any support means so much more.” Suzanne, Lydia’s mum
At just 21 months old, Amber was diagnosed with retinoblastoma, a form of eye cancer. On her first day at the Royal London Hospital, Spread a Smile was visiting children on the wards with one of the charity’s therapy dogs. On what was an incredibly daunting day, the impact of meeting our team helped to distract and relax Amber during her first at the hospital. Since that day and throughout all her treatments at the Royal London and Great Ormond Street Hospital (GOSH), Spread a Smile has continued to support Amber and her family.
For Amber’s parents, Pippa and Glenn, seeing their daughter enjoy rare moments of fun by partaking in play and interactive entertainment is uplifting and helps them support Amber through her healthcare journey.
Pippa explains, “Amber loves singing with your entertainers – especially your musician, Sar. For us all to sing along together and be happy, even in such difficult circumstances, is such a release. We love to see her smiling and reclaiming her childhood. Spread a Smile is so valuable for parents as well as for children.”
When the pandemic began, Amber still had to go into GOSH for frequent treatment for her eye. As playrooms were closed and visitors prohibited during lockdown, not having Spread a Smile around felt like a massive void for all the family. However, Spread a Smile’s digital services including virtual entertainer visits and our Smile TV, full of pre recorded entertainer videos, provided a valuable break to the monotony of the hospital environment. After every procedure Amber would have to lie still for four hours, so having access to Spread a Smile’s online services was an amazing distraction from her discomfort.
“When we heard that Spread a Smile would also record a personalised video message, just for Amber, we jumped at the chance. We’ve watched the video so many times. Amber has also joined group virtual visits with entertainers and other children and she’s really benefitted from the peer support. In her world, she’s the only person she knows who goes to hospital and they help her feel a bit more ‘normal’. For everything that Amber has been through, Spread a Smile is a happy part of hospital and such a positive memory.” Pippa