Case Study

Your Stories - Lottie

Lottie

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Lottie was just six years old when in early 2022 she was diagnosed with an aggressive brain tumour (ATRT). Since then, Lottie has been undergoing an intensive course of treatment, including 12 cycles  of chemotherapy at John Radcliffe Hospital in Oxford, plus 6 weeks of daily radiotherapy sessions under anaesthetic at University College London Hospital (UCLH).

During her treatment, Lottie became extremely unwell and she was admitted to UCLH for five weeks. Lottie couldn’t leave her room, interact with other children or join in any group ward activities. She was away from home and her familiar surroundings and felt extremely isolated and lonely.

It was during this time that Spread a Smile met Lottie and started special weekly bedside visits for her with our Therapy Dogs – Buddy, Thomas and Smartie. These visits made such a difference to Lottie, providing her with a distraction and a chance to laugh and play with others.

Lottie’s Mum, Gemma said, “The Spread a Smile visits were the highlight of Lottie’s week. They kept her going, giving her something to look forward to when she was feeling so unwell and stuck in her room. When she saw one of the Therapy Dogs, her face would light up. I could feel her joy as she stroked their fur or gave them treats. They provided such warmth and comfort for Lottie. As her Mum, this meant so much giving me some happy memories in amongst all of the worry.”

During her radiotherapy treatment Lottie couldn’t tolerate food and didn’t eat for weeks. However being with Thomas encouraged Lottie to eat as she would break treats in two, giving half to Thomas and eating half herself. This was a huge moment for everyone.

“Meeting Buddy the Spread a Smile therapy dog in hospital was amazing as Lottie loves animals. Lottie was feeling really down and poorly as she had been having radiotherapy and hadn’t been out of bed for most of the week. When Buddy came in I hadn’t seen her move so quick in a long time! He got her through the radiotherapy. Lottie loved walking Buddy around her room and she would’ve hid him under her bed and kept him if she could.” Jason, Lottie’s Dad

Now that Lottie is back under the care of John Radcliffe Hospital, Spread a Smile continues to support Lottie through virtual visits. Even though Lottie is extremely unwell, she and her family were able to join us for a recent VIP outing to see The Lion King in London, making happy memories on a rare day out when they could all be together.

Lottie has two siblings, Amy who is 15 and Jacob who is 11. Amy has taken it really hard as she understands everything. Jacob has major separation anxiety and leaving him for the 6 weeks when Lottie had radiotherapy in London was really hard.

So going on the Spread a Smile outing to see The Lion King was lovely. We’d been in and out of hospital since Lottie’s diagnosis 6 months before and it was the first time that just the 5 of us have had a day out together. It was very special.”

“Spread a Smile has been everything. Psychologically for us as parents it’s been tough. Laura from Spread a Smile has stayed behind chatting to us after sessions (when she didn’t have to do) and that’s been amazing and a huge support. What they do is unreal.

Even when Lottie is going through so much, fighting for her life and feeling horrendous all the time, Spread a Smile brings a smile to her face. And that’s all you want for any child. 

Spread a Smile is an amazing and special charity and we feel so lucky to have found them. They bring such comfort and joy and have held Lottie’s hand during the most difficult time of her life.”

Please help ensure we can continue to support children like Lottie and their families by donating today. Thank you.

Your Stories - Amber

Amber

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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 this first visit to the hospital.

Since then, Spread a Smile has supported Amber and her family throughout all her treatments at the Royal London and Great Ormond Street Hospital (GOSH).

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.”

Please help ensure we can continue to support children like Amber and their families by donating today. Thank you.

Lydia

Lydia

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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. As a result, Lydia endured multiple invasive surgeries to remove tumours, daily medication and ongoing hospital treatment to control the spread of the tumours.

One of her most recent medical treatments involved a dose of radiation so intense that she had 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 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 further impacted her feelings of separation and isolation.

Meeting Spread a Smile has made a hugely 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.

Suzanne, Lydia’s Mum said, “Pain and treatment has been 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 changed when 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, Spread a Smile 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.”

Please help ensure we can continue to support young people like Lydia and their families by donating today. Thank you.

Your Stories - Niko

Niko

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In February 2022 Niko’s family’s, world was flipped upside down when at the age of just two years old, Niko was diagnosed with Acute Lymphoblastic Leukaemia, an aggressive type of blood cancer. Niko was admitted to Great Ormond Street Hospital (GOSH), where he received blood tests, blood product transfusions and other urgent procedures including genetic testing, bone marrow tests, lumbar punctures, blood tests, antibiotics, steroids and high intensity chemotherapy.

The family were told that Niko’s treatment plan would last at least 3 years and that it would involve 13 rounds of Chemotherapy. A long and draining future lay ahead.

By mid-March 2022, Niko’s treatment was so intense, with so many negative side effects, that he stopped walking, playing and being able to move independently. After a period of investigation and tests, adjustments to his medication, consultations with physiotherapy and special aids, Niko recovered some of his mobility, although it still isn’t 100%. It was an extremely scary and emotional time for the family. Niko continues to be very weak, gets very tired after just a few steps and his legs often just give way underneath him meaning that he falls over a lot.

There then followed other phases of treatment which once again involved a lot of hospital admissions and more chemotherapy, during which time Niko lost his hair for the fourth time. It was a relief to find out at the end of this phase that although by no means the end of the road, Niko was considered to be in remission.

Since September 2022, Niko has been having daily chemotherapy at home to try and prevent any remaining cancer cells from reproducing and taking over again. Niko visits his local hospital, Colchester General Hospital weekly for blood tests and every four weeks for IV chemotherapy and steroids pulses. He now only attends Great Ormond Street Hospital every 3 months for further checks and treatment which includes lumbar punctures and infused chemotherapy into the spinal cord and fluid around the brain.

The family first came across Spread a Smile in late Spring 2022 when a member of the hospital play team gave Niko a Spread a Smile ‘walking balloon’. Niko was having an awful day, fasting before surgery and the balloon made such a difference, lifting his spirits and giving him something exciting to focus on.

Mum Katie said, “As soon as Niko saw the balloon he started to smile. I googled Spread a Smile, as there was a sticker on the balloon, to find out more about them and got straight in touch when I saw all of the different activities they offer that I knew might help Niko. Niko started having one-to-one virtual sessions with Spread a Smile Entertainers over the summer holidays including magicians and fairies. He particularly loved the magicians who made him smile, laugh and shout at the screen every time.” 

“When you are going through such a hard, draining and emotional time, seeing your child smile, even if very briefly, can mean everything.”

Please help ensure we can continue to support children like Niko and their families by donating today. Thank you.

Your Stories - Aditi

Aditi

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When she was five years old, Aditi was diagnosed with Nephrotic Syndrome and Renal Failure. As a result, she requires dialysis three times a week, and a Bone Marrow Transplant.

Aditi’s health concerns have been a huge adjustment for the family. As Aditi’s Dad Uday said, “Aditi’s diagnosis turned our life into a different direction. We weren’t able to make spontaneous plans or travel to see family in India which was very hard. Aditi was only able to go to school for 2 hours a day on non-dialysis days and she has missed out on so much. Her brother has also been affected, as we try to juggle supporting Aditi and also Adithya during a pivotal time in his education.”

We first met Aditi and her family at Great Ormond Street Hospital in 2020 and have been supporting her with one-on-one sessions since August of that year.

Uday says that Spread a Smile has become ‘part of the daily fabric of their lives’. While Aditi’s taste has changed from nursery rhymes to Disney songs, our singing sessions and other support have played a hugely positive role during her time in hospital. Being able to experience fun and creative activities whilst undergoing treatment and in isolation brought joy and variety into the family’s life, especially as Aditi is unable to properly experience school. It also helped to take away from the common feelings of a hospital stay, which can range from worry to monotony.

Uday says that the Terrible Thames boat tour, which we invited the family to, was one of their most special memories of our work. He remembered Aditi and her mum, Divya, spending days leading up to the trip picking out clothes and hair accessories! Taking the family to the Theatre Royal to see The Tiger Who Came to Tea was also special, as they were able to have a whole family day out, including Adithya.

Getting to know Aditi and her family has been a joy and knowing that we can continue to make a difference in their lives is so meaningful.

“Spread a Smile brightened our world and they feel like part of the family. Aditi has found so much joy and happiness during the sessions and outings and has felt so special and loved. Spread a Smile have helped us all and given us such beautiful memories.” Uday

Please help ensure we can continue to support children like Aditi and their families by donating today. Thank you.

Your Stories - Jacob

Jacob

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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, so the search for a donor began immediately with Jacob having 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.”

Please help ensure we can continue to support children like Jacob and their families by donating today. Thank you.

Your Stories - Sophie

Sophie

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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 immediately had to endure a seven-hour operation to remove her tumour, and nine grueling 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 University College London Hospital (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.Charlotte said, “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, giving her something to look forward to. At a time when Sophie felt isolated, anxious and as if time moved slowly, Spread a Smile’s visits provided 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.” 

Sophie passed away in September 2021.

Please help ensure we can continue to support children like Sophie and their families by donating today. Thank you.

Austin and Annabelle

Austin & Annabelle

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Born with chronic kidney disease, six-year-old Austin has spent his whole life in and out of Great Ormond Street Hospital (GOSH). 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 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.

Donna, Austin’s Mum said, “It was heart-breaking to see children confined to their beds and playrooms closed. There was nothing to distract Austin from his illness and treatment.”

All this changed when a GOSH Play Specialist recommended Spread a Smile. 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.” 

Please help ensure we can continue to support children like Austin and their families by donating today. Thank you.

Your Stories - Maisie

Maisie

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Maisie’s journey began in January 2021 during the height of the second wave of Covid. After complaining of a stiff neck, an MRI revealed a mass on Maisie’s neck. She was immediately put in a neck brace and blue lighted to King’s College Hospital, where after lots of tests and weeks later, Maisie was diagnosed with Osteoblastoma – a type of benign tumour. The tumour had completely crushed her c5 vertebrae, putting her entire neck at risk.

Maisie underwent 13 hours of surgery at King’s College Hospital to remove the mass and the operation was deemed a success. However, 6 months later during a review in September 2021, the family found out that things had changed and the tumour looked different. Their worst fears were realised when Maisie was diagnosed with Osteosarcoma – an aggressive form of primary bone cancer.

After an 8 week period admitted to Stanmore Hospital for DNA genomic testing, Maisie started an intensive course of 6 rounds of chemotherapy at University College London Hospital (UCLH) to try to shrink the tumour. Unfortunately, the chemotherapy wasn’t successful, leading to more surgery to remove the tumour which took 23 hours across 2.5 days. In October 2022, Maisie started a 6-week course of daily radiotherapy sessions to treat the remaining inoperable cancer in her neck.

Spread a Smile has been supporting Maisie and her family since her treatment started – initially through virtual one-to-one sessions with our entertainers and also bedside visits from our Therapy Dog, Thomas.  These sessions have given Maisie so much joy and laughter, helping to distract her from her treatment and pain. When she feels well enough, Maisie also joins us for our Spread a Smile outings and experiences. She recently came along for our VIP trip to The Lion King in London and met other cancer patients for a fabulous cookery session and meal with the Underground Cookery School.

Claire, Maisie’s Mum says: “When we found out about Maisie’s cancer, our world fell apart. We found ourselves living from scan to scan, sitting around in hospitals, watching our young daughter undergoing painful and upsetting surgery and treatments, whilst being separated from the rest of our family. The feelings of helplessness, desperation and extreme worry and anxiety were almost unmanageable.

“Spread a Smile has helped to brighten our days during some of the darkest times. They are like a breath of fresh air and have given Maisie so much to smile about. They help us to feel normal again and forget what Maisie is going through, even if it’s for a short time. What they do is truly wonderful and I can’t thank them enough for helping my daughter to find happiness amongst the pain.”

Please help ensure we can continue to support young people like Maisie and their families by donating today. Thank you.

Your Stories - Esha

Esha

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Esha was just four years old when in May 2021 she was diagnosed with Acute Myeloid Leukaemia. Following her diagnosis, she initially spent 15 weeks in Great Ormond Street Hospital (GOSH) undergoing three intensive cycles of chemotherapy. However, after finding out that the initial chemotherapy had been ineffective, the family were told that she now needed a life saving bone marrow transplant which could be her last hope.

The doctors and the family began a global search for a stem cell match. After one more round of intensive chemotherapy during which time Esha became incredibly ill, a stem cell match was thankfully found in September 2021.

Esha underwent a bone marrow transplant in October 2021 and has been back at home since February 2022 recovering from some post-transplant complications.

In total, Esha spent nine months in hospital, five of those in complete isolation. Due to increased Covid restrictions, Esha was completely cut off from the rest of her family including her older sister, Ria. Spread a Smile supported Esha and her family during this time through one-to-one virtual sessions including art, sing-alongs, magic shows and cupcake decorating.

Esha’s Mum, Kav said: “The sessions with Spread a Smile were literally a lifeline to us whilst we were in hospital. We couldn’t see anyone or go anywhere. Just to see another human being meant the world to us and the fact that the sessions were simply about enjoying ourselves meant even more.”

Since returning home, Esha still spends most of her time in isolation, to help protect her body. She has continued her online art sessions with Spread a Smile – something she particularly enjoys.

“Esha really looks forward to her online art therapy sessions with Spread a Smile as they allow her to be creative and express herself during times when she needs to find an outlet, forget stuff and simply have fun. She is able to escape emotionally and mentally from what’s happening to her, channelling her energy and emotion and giving her ways to cope with the trauma of her experiences.

“Esha has missed two and a half years of school and has spent a large amount of that time in isolation. During this time, Spread a Smile has become part of our family. They helped us through our time in hospital, giving us hope and moments of distraction, happiness and normality. The impact they have had for Esha is huge, supporting her emotional well-being, especially during times of invasive and gruelling treatment when she was feeling the worst she could possibly feel. 

“Spread a Smile gave Esha something to look forward to and they still do! They help her to be a child again, doing normal fun activities that other children her age do. Thank you Spread a Smile for all that you have done and continue to do. You have certainly brought many ‘smiles’ to our Esha.”

Please help ensure we can continue to support children like Esha and their families by donating today. Thank you.