Case Study

Imogen was just 6 months old when she was diagnosed with a low grade glioma – a type of brain tumour – resulting in her transfer to Bristol Children’s Hospital for surgery within 24-hours of diagnosis.

Although the majority of the tumour was successfully removed, Imogen suffered a stroke during surgery resulting in life-changing disabilities. The family’s world was thrown into chaos as they started to adapt to their new reality, with Mum Emma saying,

“We knew life had completely changed. We were told that alongside ongoing treatment for the brain tumour, the most we could expect was for Imogen to be able to breathe on her own and potentially swallow. Imogen is non-verbal and reliant on us for every aspect of her life but has completely exceeded expectations, being able to sit unaided and drink and eat herself.

After her initial surgery, Imogen underwent 18 months of chemotherapy, spending months in and out of hospital as she was so sick. In the following years, Imogen underwent two further brain surgeries after the tumour grew, followed by further rounds of chemotherapy.

“When Imogen was 12 years old, doctors discovered that the brain tumour had grown again but that surgery wasn’t an option as the tumour was growing into the middle of her brain. We were transferred to University College London Hospital (UCLH) for six weeks of proton beam (radio)therapy under general anaesthetic. It was during this time that we first met the charity Spread a Smile.

“We would see the Spread a Smile entertainers on the wards – fairies, therapy dogs and magicians – bringing so much joy and fun to children and families undergoing treatment. Imogen had to wear a special radiotherapy mask during her treatment and one of the Spread a Smile artists kindly decorated it for her with hearts and stars, making it so much less clinical and more child friendly. It made such a difference during that very difficult time.

“After Imogen’s treatment had finished she was quite poorly, experiencing huge fatigue. Life stuck at home was very boring for her and it was at this point that Spread a Smile became a lifeline to us. We signed up for their weekly virtual one-to-one entertainer sessions and they quickly became the highlight of Imogen’s week. Imogen is really social and she literally lights up when the entertainers start chatting and singing with her. I might not hear her vocalise for a whole week, but then suddenly during the half hour online with the Spread a Smile singers and fairies, she would have the biggest smile on her face, singing along in her own way.

“Imogen is now able to access school for a while during the week, but we continue our sessions with Spread a Smile. She can get so bored at home and it’s lovely to watch her join in, engage and have so much fun. It literally brings a tear to my eye and means so much to me as a Mum to be able to experience these glimmers with her.

“Due to the level of Imogen’s disabilities, a lot of support offered by other charities isn’t suitable for Imogen, but Spread a Smile meet Imogen in a beautiful way that reflects her abilities, ensuring she gets the most out of her sessions – it really is very special.

“Imogen and her two siblings were all sent Smile Hampers by Spread a Smile at Christmas and Imogen’s box was so carefully curated and well thought out, full of gifts that she could actually use and enjoy. We were so grateful for that.

“We’ve also joined some of Spread a Smile’s family events including a theatre trip with the whole family to see The Lion King in the West End and also the Winter Party. We were able to have much needed days out with the whole family and they are a brilliant way to meet with other children and families we’ve met in hospital. The events are a safe space to share experiences with people who understand what you’re going through. At the Winter Party Imogen just loved all of the music and entertainment – watching Anna and Elsa perform and eating cake. Her siblings got stuck in with all of the activities there, from face painting to arts and crafts. There really was something for the whole family.

“Spread a Smile has been our constant in recent times providing such wonderful support, fun and solace. As we continue to navigate life managing Imogen’s brain tumour and disabilities, it is nice to know that they are by our side, helping to provide some very special moments full of smiles.”

Just £30 will help fund an entertainer visit for a child in hospital.

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

Bay fell suddenly and unexpectedly ill when she was two years old, with a blood test revealing worryingly elevated levels of potassium leading to a sudden deterioration in her health and the discovery that Bay’s kidneys were failing.

Things moved very quickly with Bay being transferred immediately by ambulance from her local hospital to Great Ormond Street Hospital (GOSH).

Mum, Jen said, “When ‘kidney failure’ was mentioned, my world collapsed. Bay was intubated as soon as we got to GOSH and I was told she wouldn’t survive the night. We had a fight on our hands from that minute, and Bay spent the next 2-3 weeks intubated whilst they stabilised her. It was a terrifying time as we didn’t know if Bay would survive, but after some complications and a month or so, she was moved out of intensive care to the renal ward at GOSH so we could start dialysis.

“Both myself and Bay’s Auntie learnt how to manage the dialysis so we could eventually go home and treat from there. After three months, we were back at home adjusting to our new life, with Bay on dialysis every night for between 12-18 hours every day. This lasted for three years.”

Spread a Smile first met Bay and her family early on in her journey when Bay was just two years old and an inpatient at GOSH.

“I’d taken Bay down to Coram’s Fields to play and we noticed that Spread a Smile had a party going on. Debbie from the team approached us and invited us to join in the fun and it was absolutely mesmerising. We were showered with love and support from the start and Debbie really took us under her wing, looking after us the whole time. She took our details after that and so our lovely relationship with Spread a Smile began.

“We would see the Spread a Smile entertainers as much as possible whenever we were in hospital and I couldn’t imagine life there without them there. Being in hospital can feel pretty bleak when you have a young child who isn’t allowed out of their room, let alone off the ward. You exhaust all the play options pretty quickly and it becomes harder to keep them entertained. But when Spread a Smile walk in, they inject happiness, optimism and fun straight away. The team got to know her and what she likes, distracting her from what’s going on medically and her spirits are lifted. They became like a reassuring blanket for Bay and even after 7 years, her face still lights up whenever she seems them.

“One year we went to the Spread a Smile Winter Party and Bay’s cousins came as well and we were all wonderfully spoilt. It’s so nice for Bay to do things with her family after all the trauma and to have the opportunity to have so much fun together.  

“The last 7 years have been really challenging at times, but when I think back, I can think of Spread a Smile in amongst it all and it’s nothing short of wonderful. For me, they bring familiarity, friendship, love and the sense of normality from just being able to watch your child play. You forget you’re in hospital when Spread a Smile are around and I can have five minutes to breath as I trust them and know she is safe and entertained with them. When Bay is happy, Mummy is happy!”

In August 2021, Bay underwent a kidney transplant and although the operation went well, there were complications which meant Bay spent another four months back in hospital, starting in intensive care.

“That was a tough time and once we were home it took a while to rehabilitate Bay. She’d become frightened of something bad happening, but Spread a Smile were there the whole time, offering support and distraction. Bay took part in virtual sessions with their entertainers and also loved it when they visited her in hospital. She does art sessions online and got to know her friend Aditi. They love meeting online to talk about what they are going to do.”

In December 2024, Bay was diagnosed with post-transplant lymphoproliferative disorder (PTLD), a serious complication that can arise after organ transplantation. Bay started chemotherapy and immunotherapy straight away with initial concerns as to the prognosis due to her fragile cell count and kidney transplant.

“We went to a Spread a Smile LEGO event, and I found a shoulder to cry on in Ellie. I just poured my heart out to her as I couldn’t believe we were in that situation and having to go through even more heartache. And once again, Spread a Smile was there for us when we needed someone. Fortunately, the situation changed and Bay was able to switch onto blocks of aggressive chemotherapy.

“Bay has finished chemotherapy now and in November 2025, we found out that she is in complete metabolic remission and she rang the end of treatment bell at GOSH. We will still have lots of follow ups and checks, but we’ve come out the other side of the kidney transplant and she’s doing really well. And Spread a Smile are still there for us, with Bay doing 1-2-1 virtual art sessions which she loves, along with music and magic shows. Spread a Smile really are wonderful. A familiar, warm wonderful and I don’t know what we’d do without them.”

Just £30 will help fund an entertainer visit for a child in hospital.

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

Eliza was diagnosed with neuroblastoma when she was just 8 weeks old, sadly passing away just before she was 8 months old from liver disease following her chemotherapy. Eliza’s Mum Hannah shared the difference Spread a Smile has made to her family, whilst Eliza was in hospital at Great Ormond Street Hospital (GOSH) and since Eliza passed away in February 2023.

“We met Spread a Smile one Thursday on our first visit to GOSH. It was an awful time as we didn’t know what was wrong with Eliza to start with and we were stuck in a hospital room, worrying and not knowing anyone to talk to. And then one of the Spread a Smile entertainers came in with her guitar and sang for us. Eliza was transfixed and it was so, so wonderful to see.

“From then on, every Thursday we would see the Spread a Smile entertainers and although Eliza was very young, she would absolutely love the singing. We also met magicians who would come and do magic tricks for my husband and I, which we both really enjoyed. It was nice to have something for us and we also got to know Josephine, one of the charity’s co-founders, and we were so grateful for their support on those Thursdays.  

“In January 2023 Eliza was in GOSH for high dose chemo and I saw a Spread a Smile flyer about a family visit to see ‘Sing’ at the Everyman Cinema in London. We had three other boys at that time (we now have four!) and thought it would be the perfect thing for us to do together as a family as I’d rarely seen the boys over the past two months. So, we arranged for them to come into London for the day, and I don’t think we have ever felt so looked after and cared for as we did by Spread a Smile that day. The boys had never felt so special, and we were welcomed with open arms, treated to food, treats and entertainment before sitting down to watch the film together. I literally cried the whole time – just seeing us all together having such a special day out in amongst it all. That evening, I went back to the hospital and lay next to Eliza in bed. I made an Instagram reel of the photos of our day together. I cried all over again remembering how it felt to just be a normal family again, connecting and enjoying time together. It was truly amazing.

“Eliza died unexpectedly a few weeks later from a liver disease caused by the chemo. We went home and started to navigate life again after loss. And then in March 2024, Spread a Smile invited us to a Memorial Event to remember children who had passed away and it was such a lovely thing to do. After Eliza died, so much support fell away because it is understandably often directed towards families going through treatment. But that’s hard when you lose a child as you can suddenly feel very alone. The Memorial Event was a wonderful opportunity to remember Eliza and I cried through the whole thing, also knowing that the boys were so looked after by the entertainers there. At one point, I heard my son Jesse laughing so loudly I panicked as I thought he was crying and upset. But when I ran over, I found him laughing so hard with one of the Spread a Smile magicians and having the best possible time. When you’re just trying to keep going through grief, hearing your child laugh means everything.

“In the Summer of 2024 we went to our first Spread a Smile Summer Party and it was truly wonderful. I took three of the boys on my own and we had such a brilliant day. The Spread a Smile team are always so supportive, and the day was such a treat. Going to these events means we can stay connected with Eliza, with the charity that helped her and us whilst she was ill and in hospital. It is a way of reconnecting with the lovely people we met from the charity during that time. Eliza was unwell for most of her short life and our time with her was all about hospitals and the people we met there. This year all six of us will be at the Summer Party and it will be our way of reconnecting with Spread a Smile and remembering our time with Eliza. 

“It takes a lot being a family with four young boys, managing grief alongside the day to day of school, friendships and everything in between. We often struggle to get out. Being able to go to things like the Summer Party is wonderful as we are so well looked after and don’t need to worry about finances, or the day-to-day stresses of life. We can just be together as a family, enjoy ourselves and remember Eliza with love, alongside the lovely people from Spread a Smile who have truly made us smile and still do to this day.”

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

When Brett was two and a half years old, he kept spiking a temperature at night, returning to normal during the day. His parents were worried so took him to hospital where repeated blood tests over time revealed slightly increased levels of the alanine transaminase (ALT) enzyme and subsequently higher level of a muscle enzyme. Brett was referred to The Evelina Children’s Hospital where he was diagnosed at the age of five with a rare muscle condition which causes hypermobile and increased limb rotation.

Mum Victoria said, “It was an extremely scary time as it took a while to establish what was going on whilst hearing it could be his kidneys or other rare and serious conditions. We spent a lot of time in and out of hospital for blood tests and were referred to Great Ormond Street Hospital (GOSH) where there was a specialist in his group of conditions. His condition is extremely rare and only 1 in 50,000 have it.

“Brett started treatment and infusions every two weeks at GOSH to proactively try and prevent damage to his muscles. It meant extremely long days, with us leaving the house at around 6am to get to GOSH for 9am and not leaving until 11pm at night. We were juggling school and also having a Brett’s sister Ella, who was only young at the time.

“We first met Spread a Smile on one of these visits to GOSH and it couldn’t have been at a better time. Brett often found treatment very distressing and we’d had a particularly difficult time, with him getting very upset and his sister Ella getting scared by what was happening. Then Spread a Smile knocked on our door and helped to distract them both from what was happening. They sang and did some magic and made little bracelets with the children. The mood lifted and it was such a relief.

Brett also added his thoughts, saying, “I have a rare muscle condition, and I am really flexible. Spread a Smile are always there when you need them. When I was in hospital at first and I was scared, Spread a Smile walked in and cheered me up.”

Mum Victoria continued, “From then we would see the Spread a Smile entertainers every time we were in hospital and got to know them quite well. They always helped to bring some fun and distraction to our visits. If I had to stay with Brett during treatment whilst he was getting upset, Spread a Smile would do a virtual session with Ella in another room and it was amazing that she had something fun and positive to do.”

“In February 2024, Brett started homecare treatment meaning he don’t have to go to hospital so regularly which is brilliant. But the downside is that we don’t get to see Spread a Smile! I wanted to do something just for Brett so I reached out to them to ask about guitar lessons. He already had a guitar and he now has virtual lessons with Al or Cassie from Spread a Smile every two weeks. They are absolutely fantastic and Brett loves them. They give him something to look forward to and focus on and a break for me at the same time.

Brett also shared more about his homecare treatment saying, “I have an assistance dog called Eevee and she helps me when I need my medicine. I put one hand on Eevee and she lays on my lap and I cover my eyes and countdown from five. I love taking Eevee for walks and whenever I need her I give her a cuddle and she helps make me feel better.

“When I was little, I had to have lots of blood tests in my hand which were painful. Now I have homecare I don’t have the medicine trolley and can wear my backpack and play just like other children. I love learning to play the guitar with Spread a Smile.”

Spread a Smile has also supported Brett and his family through our family events and outings with Victoria saying, “We’ve also gone to some brilliant Spread a Smile family events such as an Everyman Cinema trip, a LEGO event and their winter Party. It’s been great for us to do something as a family and for Brett to meet and see other children life him who are having home treatment. At the last Winter Party he saw another child with a medication backpack saying, ‘Look Mummy, another child like me.

“I’ve been able to speak to other parents at the events who can empathise with what we’re going through and I met a Mum who also had a young baby when their other child had been diagnosed. We talked about having to juggle roles as a Mummy to a young baby and as a medical parent to the other child and it was so comforting to share our experiences.

“Brett’s diagnosis comes with some challenges on what he can do physically, but through the guitar he has found confidence and a passion for something he’s good at. He says it makes him unique and he really is an incredible young man.

“For Rare Disease Day on 28 February, Brett’s school are celebrating and fundraising for Spread a Smile. All of the children will dress up in the colours of Spread a Smile and donate to help other unwell children. It’ll be a really special day and I’m so proud of Brett and everything he does.”

Brett added, “Spread a Smile make me smile, like at the Winter Party. Whenever I am with them, they make me happy.”

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

At the end of December 2022, when Alexia was just 9 years old, she began to feel very unwell. She experienced varying symptoms from insomnia to severe headaches, stomach problems, loss of appetite, physical weakness and personality changes. She also began to drink excessive amounts of water at night and had an insatiable thirst. Her mum, Alana, took her back and forth to the Doctors and A&E where they carried out various tests over 10 weeks to figure out what was going on, but all the results were within normal range.

By the end of February 2023, Alexia was unable to eat anything without being sick and began to lose a significant amount of weight. The doctors thought that she might be suffering from anxiety or was being bullied at school or maybe had a food allergy. In March 2023, she came home from school and said she was unable to see the board clearly, her parents found this strange as she had an eye test the previous week and the results for this was normal.

Mum Alana said, “I was sitting next to Alexia on the sofa at home and she told me that she couldn’t see me and could only see half of her Dad, who was sitting opposite her. At this point we knew that something was seriously wrong.

“We went back to the Optician who had seen her the previous week, and he told us to go to the Doctor and to call him when we were there so he could speak to the Doctor directly. We were referred immediately to a specialist Ophthalmologist at the hospital who confirmed that the health of Alexia’s eyes was fine, however there had been a change in her vision which was not normal.”

Alexia’s Mum took Alexia back to A&E where Alexia began to vomit and was admitted to the ward for further testing. The next day she fainted and by that afternoon she could only see a pinhole. A second MRI was taken of Alexia’s head (this time using dye), which revealed a tumour on Alexia’s pituitary gland which was touching her optic nerves and affecting her vision.

“It was our worst nightmare come to life and as I listened to the doctor telling us this news, it felt like an out of body experience. I could not believe that this was happening to us.”

Alexia was transferred immediately by ambulance to the Paediatric Intensive Care Unit (PICU) at St George’s Hospital and the children’s ward, where she lived for the next three months. During this time, she underwent her first brain surgery which took six and a half hours. The surgeons tried to remove the tumour however they decided it was too high a risk. Instead, he took a biopsy and drained some of the fluid around the tumour relieving some of the pressure on the optic nerve with the aim to improve her vision.

‘We were relieved that some of Lexi’s vision returned but we were devastated that the surgery was not successful.” 

The results of the biopsy showed that Alexia had a rare mixed germ cell tumour and she spent the next three months living in hospital as her medical team worked out a treatment plan and next steps. During this time Alexia’s vision started to deteriorate again. She was given an emergency round of chemotherapy to see if the tumour would respond and spent the next months in the Royal Marsden in Sutton receiving intense chemotherapy treatment. In between her treatment cycles she would be allowed to go home however, she would often become unwell and had to be admitted back to St Georges Hospital in the children’s oncology ward.

‘To say our world was literally turned upside down would be an understatement. It was an extremely traumatic and upsetting time for us all but especially Alexia as she was often in isolation because of the high risk of infection so she could not see many of her friends or family.

“When we told Alexia that she had a brain tumour, her first question was ‘Am I going to die?’. She was worried that everybody who gets cancer dies. It was such a difficult time for the whole family, but it was even more traumatic for Alexia when she lost her hair. Despite all this, she always tried to smile through her pain and put on her ‘brave’ face.”

In August 2023, Alexia had brain surgery for the second time. This time with the purpose to remove as much of the tumour as was safely possible. After five hours in surgery, her neurosurgeon was confident, that despite the dangerous position of the tumour, they had managed to remove most of it.  The surgery was successful and subsequent MRI and CT scans showed that most of the tumour had been removed.

Her treatment continued in the months that followed where she underwent daily Proton Beam Therapy (PBT) at the University College London Hospital (UCLH).

“During our journey, we always noticed the Spread a Smile entertainers visiting, but it was when we were at UCLH that we really got to know them. They would attend the PBT children’s ward every Friday and all the children especially Alexia would look forward to their visit.”

Alexia loved taking part in the weekly art classes and really enjoyed the days when Buddy the therapy dog would visit. The visits from the therapy dog was one of the things that impacted Alexia the most. Many times, when she was admitted to hospital and was so weak that she could not move much, she would ask for the therapy dog to lie next to her on the bed and she would stroke him. His warmth and gentle nature provided Alexia with great comfort during times of distress and helped to give her the strength that she could get through it.

“We also met Buddy’s owner, Josephine, one of Spread a Smile’s Co-founders. I found out from Josephine how the charity started. She was very encouraging, and it made such a difference to connect with someone that could relate to how much life changes after a cancer diagnosis.

“Spread a Smile provided a much needed and welcome distraction whilst Alexia was in hospital. She would try so hard to be brave all the time and keep a smile on her face but I knew that she missed being at home with her siblings and friends. We would often hear the singing and laughter before we saw the familiar Spread a Smile t-shirts and she would be eagerly staring at her door waiting for the opportunity to see one of the entertainers.

‘In one of her admissions when she was in isolation, they even stood at her door and did a performance just for her. It really made her feel special and reminded her that life wasn’t always going to be this hard and maybe there was a light at the end of the tunnel.

“It really brought tears to my eyes to see how much effort the Spread a Smile team put into making each child feel special and putting a smile on their faces. It really made a huge difference to me as a parent to see how happy it made Alexia every time she spent time with one of the Spread a Smile team.

Alexia really enjoyed the wide range of activities that they put on for the children and she was able to interact with other children who also had cancer.

‘In those moments they were just a bunch of kids enjoying time together and just being children. The sound of her laughter and the smile on her face gave me hope and reminded me that one day our family would be back together, and Lexi would be ok.

 “When Alexia was well enough, we also went to an afternoon tea that Spread a Smile organised in London, which she really enjoyed and she got to interact with other oncology children who were at the same hospital but whom she had not met.

In February 2024, for Alexia’s 10th birthday she wanted to do something impactful to help other children who had cancer. She remembered how happy she felt when she saw Spread a Smile’s entertainers and how they made her forget how difficult it was being in the hospital. For her 10^th birthday she shared how much of a difference Spread a Smile made to her life at hospital and asked family and friends to donate money to her fundraiser for Spread a Smile instead of giving her a birthday present. She was really chuffed to raise even more than she thought she would have and managed to raise £750.

“It meant a lot knowing that our friends were acknowledging and supporting a cause that has made and continues to make such a difference to Alexia and us all.

“Spread a Smile offers virtual art and singing clubs and although Alexia has thankfully not had to be admitted as often as before she has still been able to join in with the weekly virtual classes and looks forward to this every week. SAS has been a huge help in helping Alexia to transition back to ‘normal life’ and continues to be a part of her journey even after the completion of her treatment.

“Spread a Smile has played a massive role in our whole family and even with Alexia’s siblings and will always be a charity that we will continue to support and recommend to other oncology families.”

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

In January 2020, Kian was diagnosed with epilepsy after experiencing unusual movements and drop attacks, with his body dropping to the floor uncontrollably. He was admitted to the children’s ward at Colchester Hospital where he had an EEG which confirmed he had epilepsy, after which he was referred to the Epilepsy Team who recommended a course of medication to help control the seizures.

A few weeks later, Kian started to experience more serious Tonic-clonic seizures, involving loss of consciousness and violent muscle contractions. He started to experience around 30-40 seizures a day, spending a huge amount in and out of hospital and trying different medications. Kian was diagnosed with Epilepsy with myoclonic-atonic seizures (EMAtS) or Doose Syndrome. Some days he was experiencing up to 300 seizures a day across a 6-8 month period.

Just before Kian’s 6th birthday he was admitted to Addenbrookes Children’s Hospital, undergoing further tests and procedures to try and establish what was happening and to start a specialised ketogenic diet to help treat the seizures he was having. Kian went from being a very calm and happy boy to feeling very angry and frustrated with life. It was an incredibly stressful time for the family, with Kian and Mum Danielle being away from home so much, with Danielle saying,

“Kian’s personality completely changed, and it was so tough for him. He is very close to his Dad, but as Kian has a younger brother I would go to hospital with him and his Dad would stay at home with Ethan. Kian wasn’t able to go to school properly because of the seizures and it was also during the pandemic, so he was missing out on so much. We all really struggled. It was during our time in Colchester Hospital that the Epilepsy Nurse suggested reaching out to Spread a Smile to see if they could support us in some way.”

Spread a Smile arranged for a virtual visit for Kian with one of our entertainers, which led to more regular virtual sessions for Kian and his brother Ethan.

“Kian loves dressing up and he loves being on the sessions with the Spread a Smile fairies. Disney Princesses are his favourite and it’s his release from everything going on. He calls the fairies his Fairy Godmothers and looks forward to joining in and singing with them. He’ll talk about the sessions for ages afterwards and they have been a brilliant distraction for both him and his brother.  

“During the pandemic, Kian didn’t have many opportunities for socialisation, but the virtual sessions with Spread a Smile provided him with space to explore his imagination. It’s wonderful to see how his passions and choices are supported through the sessions. The Spread a Smile team embrace him and whatever he chooses to dress up as and it means so much to him that they engage with him for who he is.

“We all love sitting down together for the monthly magic sessions as well. We laugh and have fun and it’s so lovely to see the boys having fun together. It means a huge amount.”

Kian and his family have also enjoyed some of the charity’s family events and outings.

“The team at Spread a Smile has taken care to get to know Kian and what he likes. They have invited him to some brilliant events, including theatre trips to see Frozen and Wicked and also their Winter Party. He has loved every single one of them and everyone is always so welcoming and kind. When we went to the Winter Party it was the first time we’d all been out together as a family in a long time. Watching the boys get stuck in and enjoy themselves was amazing and they wouldn’t stop talking about it for days to come afterwards. It was so uplifting and such a wonderful opportunity to step away from the day to day worries of managing Kian’s epilepsy and just have a normal, quality day together as a family.”

“Kian still has seizures every day, but the number has reduced dramatically to between 5-10. During all this time Spread a Smile has been a constant for us. Every month the boys have something to look forward to and the team are always there for us, providing a brilliant distraction and focus for fun and laughter. We don’t know what we’d do without them.”

Kian said, “I hate epilepsy, but I love Spread a Smile.”

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

Talulah was born a happy, healthy little girl, but as she got older the family noticed that she wasn’t meeting expected developmental milestones. Doctors initially thought it was global developmental delay, but the family knew deep down that something wasn’t right. They spent the next five years trying to establish a more accurate diagnosis, pursuing genetic testing at Great Ormond Street Hospital (GOSH) where a blood test confirmed that Talulah had a rare genetic disorder called Wiedemann-Steiner Syndrome (WSS), which affects physical, intellectual and emotional development.

Mum Rebecca said, “Although it wasn’t nice to hear the diagnosis, we had already been living with the effects for a while, so it was finally good to have some answers and be able to start to think ahead.”

Lots of appointments to check various things such as her heart, teeth and hormones followed leading to the discovery of hip dysplasia in both hips. Over three years Talulah underwent five operations to replace and fix her displaced hips and it was during this time that the family were introduced to Spread a Smile.

“Talulah spent a lot of time in hospital, in pain, recovering from her operations, using a wheelchair and learning to walk again. It was during the pandemic and so we found ourselves stuck in hospital, with no access to playrooms and not able to see the rest of the family. This is when we started having virtual Zoom sessions with one of the Spread a Smile fairies and they completely changed the surgery experience for Talulah, bringing so much excitement and happiness. We would count down the hours until each session and it was always a light at the end of a horrible day.

“Part of Talulah’s disorder means she has horrendous anxiety and the sessions with Spread a Smile’s entertainers really helped to relieve this when she was feeling anxious. We could jump on a call for some singing, drawing or storytelling and it was a lifeline, helping to calm her down and bringing so much joy.”

Another symptom associated with WSS is increased hair growth, with Talulah’s hair growing at a considerable rate. “We’d spent a lot of time on the wards at GOSH meeting other children, some with cancer who had lost their hair during treatment. We met one little girl who was only four years old and had to have her tongue removed but she was so happy and helped to encourage Talulah to get out of bed after one of her hip operations to move around and dance with her Zimmer frame. After that we decided we wanted to do what we could to help other children going through such awful things and as Talulah’s hair grows so long so quickly, we started to cut it every year and donate it be made into wigs for children who had lost their hair to cancer.”

Talulah has been cutting her hair for since was four years old (she is now 11) and in both 2023 and 2024, Talulah and her family have also used the annual hair cutting to raise vital funds to support Spread a Smile and also help fund the making of the wigs, raising nearly £12,000 to date to support both Spread a Smile and the Little Princess Trust.

“We are so grateful for everything Spread a Smile has done for us. It’s been so wonderful to have zoom sessions to look forward to and to meet all of the amazing Spread a Smile entertainers who have not only helped and entertained Talulah but her siblings as well. We have built wonderful relationships with them all which has helped with Talulah’s anxiety and bring our family together when she was recovering at home for some very special moments. Spread a Smile provided us with a joyous, happy and a safe place and hearing my three kids giggle together was one of the best things.

“Sometimes when you’re in the midst of hospital life and treatment you don’t have the energy to laugh or smile as you’re so focussed on supporting your child and keeping them well and happy. Being with Spread a Smile was always such a relief. They gave us time to stop, sit down and breath, knowing that our child was entertained, happy and looked after. Seeing her laugh meant the world to me.  

“We have been through some horrible times and a lot of pain and trauma and Spread a Smile have been a bridge between those awful experience and now. Talulah is in good health and looking forward to starting a new school in September, but we will never forget the impact that the wonderful team at Spread a Smile has had for us.”

Talulah wrote the following message to us, “To Spread a Smile – best charity ever, Thanks for always helping me in hospital. You always make me feel very happy and smiley and also you cheer me up when I’m in hospital and you also cheer everyone up. When I was bored in hospital you made me excited and some days when I wasn’t at school I just jumped in the Zoom calls with Kiri. Love Talulah.”

Mum, Roop, shares Ajooni’s story with us… “Three weeks short of her third birthday, Ajooni was diagnosed with leukaemia. Looking back, she had exhibited signs however, she had never been a good eater and seemed to pick up every bug at nursery, so we put her lack of energy and disinterest in play down to yet another cold. 

“However, the lethargy went on too long and when she started complaining her arms were hurting and her stomach was hard to touch, I took her to A&E at our local hospital. Within hours we were told she had just four platelets left in her body (between 500-600 is normal) and required an immediate blood and platelets transfusion.  It was a complete shock, we had been in the middle of arranging my elder daughter’s birthday party for the following day and when I called and told my husband, he was standing in a shop buying balloons.  He’s not bought a balloon since.

“After the transfusion Ajooni was transferred by ambulance to Great Ormond Street Hospital where further tests confirmed her diagnosis and treatment commenced.  I can still recall how small and pale she looked in that big hospital bed and how traumatic those first few days and weeks were, from putting in a canular to the constant testing and medicating.  She cried and was so exhausted and from then on became incredibly nervous of any medical professional coming into her room.

“Fairy Kiri from Spread a Smile popped her head into Ajooni’s room one afternoon about a month into our hospital stay. She sprinkled some fairy dust and it all seemed so magical in such a clinical world.  Ajooni couldn’t believe it; a real-life fairy coming to sing and play with her. From that first visit she couldn’t wait for Spread a Smile’s next visits and she formed a wonderful connection with both Fairy Kiri and Mr Squishy, they lifted her spirits every time. When she was stable, we were also fortunate to enjoy a trip to see the Peppa Pig Show in the West End with Spread a Smile, which she absolutely loved. It was a very personal experience and for me it was a joy to see her smiling and laughing again. We still talk about that day and how special we felt.

“I am pleased to say that Ajooni is currently well and back home but the intensity of her time in hospital and her treatment has left its scars. She is suffering from PTSD and has a needle and hospital phobia. She worries about relapses and won’t sleep alone.  It’s going to take time and counselling for us all to heal. Spread a Smile is still supporting her. Every two weeks she enjoys a piano lesson with Andy and we can really see a difference in her – music seems to reduce her anxieties and build her confidence and subsequently her resilience. 

“I don’t have the words to express our gratitude to Spread a Smile. When other services and our safely nets were removed, they have continued to offer the most amazing support. Thank you.”

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

Jacob’s symptoms began at the end of 2021 with headaches and sickness and his Mum also noticed that his eye was turning inwards. Following an optician’s appointment Jacob was referred to the Eye Department of Queen Alexandra Hospital where an MRI revealed a build-up of pressure on his brain which was blocking fluid flow. Jacob was sent straight away to Southampton Hospital where his neurosurgeon revealed that Jacob had a brain tumour. The family’s world fell apart.

Jacob was admitted for emergency surgery the next day to release the fluid build-up on his brain. Jacob’s Mum, Donna said, “We were told that Jacob would’ve died if he hadn’t had the surgery when he did because of the pressure on his brain. It was absolutely terrifying. He then had more surgery a couple of weeks later to remove the tumour itself.”

The surgery was a success with most of the tumour removed and Jacob recovering well. But during one of his regular MRI checks in October 2022, they found that the tumour had grown back, resulting in further surgery.

“By this point Jacob’s eyes had been seriously affected and after his surgery, the team decided to use a type of radiotherapy called proton beam therapy to help reduce the chances of the tumour growing back. We went up to stay in London, going to UCLH every day for six weeks for treatment. It was during this time that we met Spread a Smile.

“We were in one Friday and met one of the lovely Spread a Smile artists who created a beautiful sign for him to go on his box for all his hospital playthings. Jacob loves Rubik’s cubes so the artist drew his name on it with a Rubik’s cube, which he loved. We also met a balloon modeller who made him a Rubik’s cube out of balloons. She said she’d never made one before, but she did a brilliant job and he thought it was fantastic.

“After that Jacob would look forward to going into UCLH every Friday as he knew he would see the Spread a Smile team. It helped him get through the week. Even though it was the worst time of my life, if you ask Jacob, he will say it was the best time because of Spread a Smile. He looks back at that time at UCLH so fondly and they helped him deal with what he was going through and find a routine within it which was so important.

“Marina the Spread a Smile artist also painted his radiotherapy mask for him which he had to wear for proton beam therapy under anaesthetic. Jacob wanted it painted with a space theme and every time he was put to sleep for his treatment, he would dream he was going off to a different planet. It helped to make it a positive experience and give him happy memories and he now proudly displays the mask. It wasn’t a scary mask because it was his space mask.”

“Spread a Smile has given us so much. During the Easter holidays, when there were less things to do in hospital, Jacob and his cousin did an online magic show session with them and it was so much fun. He has learnt magic tricks which he can now do himself. Jacob finished his radiotherapy treatment in April 2023 and even though we are out of hospital now, Spread a Smile is still there for us. They sent him a Smile Hamper at Christmas time full of presents and organised a special online zoom party for his birthday. They are so kind.  

“When we were in hospital I was sat chatting to their team about music and I mentioned I liked S Club7. The next thing I knew, they were all singing ‘Reach for the Stars’ for me. It was something just for me and such a special moment which made my cry. I was so grateful and touched.

“Everyone is so awesome. A lot of people have helped us through this awful time but Spread a Smile has helped us both more than anyone. They were there for us at the worst of times in hospital and to this day as well. I’ve felt so supported and less isolated and that means so much. Jacob’s ‘wish’, organised by Make a Wish, is to go back to London and visit UCLH so he can see the Spread a Smile team.”

Jacob is doing well and has regular MRIs to keep an eye on his brain. He said, “Spread a Smile are really COOL! I love the magicians and the dog that came in was really cute. I met a guy that made up poems and he made up one about my Auntie and Cousin coming to visit. It was so brilliant.”

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