Case Study

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.

When Freddie was 8 years old, he became very unwell with tonsillitis. His symptoms got progressively worse, including sinusitis, hay fever and severe sleep apnoea. His family noticed that the palate inside his mouth was extremely enlarged so they took him to A&E, after which he was sent to Great Ormond Street Hospital (GOSH) for surgery to drain and remove what they initially thought was a cyst.

After surgery the Consultant told the family that the cyst was actually a mass and it had been sent for biopsy and the oncology department would be in touch. Freddie’s Mum Charmaine said,

“At this point everything changed. We thought after surgery, everything would be fine, and we couldn’t understand why we needed oncology. We stayed in hospital for a couple of days to recover and Freddie seemed back to his normal, cheeky self, running around with no symptoms. However, a week later he started to show some symptoms, losing weight and not long after, we were told that Freddie had cancer. Everything was a blur after that.”

Freddie was diagnosed with rhabdomyosarcoma nasopharyngeal, an aggressive soft tissue cancer, situated at the back of the nasal area towards base of skull. Surgeons had removed the majority of the tumour, but a little bit remained, so Freddie went back into hospital to have a Hickman line inserted, starting chemotherapy two days later.

“Freddie went through 9 rounds of chemotherapy and 7 weeks of daily intensive radiotherapy at GOSH and UCLH due to the aggressive nature of the tumour. It was during this time that we met the Spread a Smile team. Freddie met therapy dogs, singers and artists and he particularly loved Abi, the graffiti artist. She would write his name and he would colour it in and she showed him how to do spray art and use acrylic art. He absolutely loved it and it helped to distract him from his treatment so much. He was in a trance with it and carried on with one-to-one sessions with Abi online to learn even more. Art is his therapy, and he loves doing an art club with Spread a Smile along with his siblings every week.

“On the first day we went to UCLH for proton beam therapy we met Marina, one of the Spread a Smile artists. Freddie had to wear a mask during his treatment, and it was an incredibly scary thing for him. Marina told us that she could paint his mask and Freddie created an A3 sketch of what he wanted on it. He drew so many things and Marina literally put everything on the mask for him. It was amazing.

“It took a huge amount for Freddie to put the mask on. The whole process of Proton Beam Therapy (PBT) and fitting the mask is really scary. It’s restrictive and not fun at all. But for Freddie, being able to design something for the mask and have his say in what it looked like changed that for him. It became more fun and less scary. When Freddie was given his mask, he was mesmerised by it. Marina was there too, and they chatted about what she had done. She had replicated his art and thoughts so well and it was very special. It helped change how he saw the mask and helped him to accept it. He couldn’t wait to phone his family to show them and tell them what was on it – all the little things he liked.

“He didn’t mind wearing his mask once it was painted and enjoyed talking with other children about what they had on their masks. He was so proud to show it to people. We now have it home and it is a prized possession on his desk which he proudly shows to everyone who comes in. His mask was his protection, and he was proud of what he had been through.”

“As a Mum it was traumatic watching Freddie have the mask put on as it is so big, and they have to clip it into place around the bed. But seeing it looking so special and personalised made things a little easier. Marina is amazing and an inspiration, just to think how she created something so accurate and perfect for Freddie. It made a difference to our lives.”

After Freddie’s initial chemotherapy and radiotherapy, Freddie started maintenance chemotherapy to pick up any remaining cells, managed through weekly visits to GOSH and daily oral chemotherapy at home.

“Throughout all of it, Spread a Smile has been there for the whole family and it’s wonderful. It was such a hard time for Freddie’s siblings as it’s easy to feel on the outside of everything he is going through and is happening. It is scary for them with us not being around all the time. Spread a Smile helped to bring us all together through enjoy a very special afternoon tea at Mildreds which we went to as a family. We all got to go to London together, somewhere the kids hadn’t been to before and the charity gave us such a happy, amazing time as a family.

“Spread a Smile also sent Christmas Hampers packed full of gifts for all of the children which we saved to open in January as Freddie had been so ill over Christmas. It was wonderful seeing the kids open them together, enjoying themselves. It was such a lovely moment, and we so appreciate everything that Spread a Smile has done for us and Freddie.

“Spread a Smile made an extremely difficult time a little bit easier. They brought a smile to Freddie’s face – to all of our faces. We really can’t thank them enough.”

Please help ensure we can continue to support children like Freddie by donating today. Thank you.

It was Christmas 2021 when 11-year-old Evie started experiencing headaches, sight problems and double vision. Her symptoms deteriorated and a seizure and vomiting followed. She couldn’t feel her arms and legs and wasn’t able to move because she was in so much pain. It was an incredibly scary time for the family as they tried to find a diagnosis, with an MRI eventually revealing that Evie had developed a rare childhood brain tumour called a pilocytic astrocytoma (JPA).

Evie said, “I remember the build up to the diagnosis clearly. I was googling online to try and work out what was wrong, and I said to my Mum ‘I bet you any money I’ve got a brain tumour’. So I wasn’t surprised when I was told and I felt quite proud of myself and my Mum that day as we’d pushed through and trusted our instincts.”

Evie was rushed to Great Ormond Street Hospital (GOSH) where they were greeted by a Neurosurgeon who told them that the tumour had blocked the flow of spinal fluid, causing a build-up, headaches and blurred vision. Evie arrived at GOSH on the Wednesday and had brain surgery on the Friday to have a shunt inserted in her brain. Her symptoms improved straight away.

“I woke up and I remember looking around, feeling so much better. I didn’t have any pain and felt pretty fantastic (although the morphine drip helped).”

Mum, Hannah said, “It was a terrifying time for us all and such a relief to see Evie feeling better straight away. She was so exhausted and slept for a couple of days after surgery. We then started to talk with the Doctors about the best way to treat the tumour going forward. The tumour was inoperable as it is in the centre of her brain and there were huge risks of memory loss and organ / hormone damage, and she was too young for radiotherapy. We started an 18-month course of chemotherapy encountering all sorts of issues along the way including hair and weight loss, seizures and short term damage to her hands and feet.

“It was such a gruelling 18 months, which hugely impacted her schooling and ability to do things she enjoyed, such as art. Spread a Smile had been mentioned to us early on and we got in touch to see how they could help. We chatted about what Evie was interested in. As she was so unwell during treatment, she couldn’t do much, but was able to join online art sessions with Spread a Smile every two weeks.”

Evie said, “I wasn’t going to school and didn’t really have anything to do, so it was brilliant to take part in the Spread a Smile art sessions. They made me feel much happier and like there was someone else out there who really cared for me beyond my family.”

Mum Hannah said, “The effects of the chemo hit Evie really hard, and I felt so sad for her as I knew she loved drawing and creative writing so much. The art sessions gave her the chance to do that again and express herself. She would come to me after each session so excited to show me what she’d done and she absolutely loved it. It sounds like a cliché, but Spread a Smile does just that, they make people smile. It was so lovely for Evie to have something that brought a little bit of normality and fun back to her.”

Since her treatment ended, Evie’s life is back on track, her hair has grown back, and she is back in school full time.

“The tumour has shrunk from 4cm to half a cm and even though the cancer is still an unknown, we live for the here and now.” Hannah said. “Spread a Smile have been amazing through it all. Kiri who does her sessions with her has really brightened her days and Evie still does the sessions once a month as she loves them so much. We’ve also been to some of Spread a Smile’s family events which have been brilliant and we definitely recommend them. We went to the Christmas Party as a whole family, and it was just amazing – so special as Evie had just finished treatment and we were thoroughly spoilt.

“I was apprehensive about signing up for support at first, but I needn’t have been. Everyone at Spread a Smile has made us feel so welcome and loved. They make such a difference to families like ours, supporting us during such difficult times. It’s nice to have people like Spread a Smile around when you need them and we can’t thank them enough for their kindness and support.”

When Folakemi was one year old she was diagnosed with a large hole in her heart (VSD) and transposition of the great arteries, a serious heart defect where the two main blood vessels leaving the heart are swapped. This resulted in irreversible damage to her lungs, causing difficulties with mobility and breathing and considerably reducing her life expectancy.  

The family were told that Folakemi would receive palliative care and she was also referred to Great Ormond Street Hospital (GOSH). Although Folakemi’s heart could not be fully repaired, she underwent successful surgery to switch the arteries and is still monitored every three months at GOSH to check that she remains stable. It was during one of these appointments, when Folakemi was around 7 years old, that the family first met Spread a Smile. 

Mum Anita said, “We were waiting for our appointment and some of the Spread a Smile entertainers came by doing magic tricks and other fun things. Folakemi absolutely loved it and it really cheered us both up. So when we left the hospital I went online and got in touch with the charity to find out more.

“We signed up for all sorts of virtual online sessions, from magic to storytelling and art and the distraction was amazing. It was nice to see Folakemi do something just for herself, that was fun and not something medical. Because of Folakemi’s condition, I was homeschooling her and we were able to sign up to an online tutor through Spread a Smile as well. They did some science sessions together which is one of her favourite subjects and it was so nice to have someone else help teach her for a bit.

“Folakemi’s condition is life-limiting and as she grows we just don’t know what will happen as her body finds it difficult to get enough oxygen around. So the online sessions give her something really happy to do. Folakemi now does guitar lessons with Andy and Kiri every other Monday and she absolutely loves them. They make them so interactive and accessible for her and take it at her speed. 

“She also does a weekly art session together with her sister which is really lovely. Spread a Smile sends out the arts and crafts pack to us in advance and the children love getting stuck in. For me, it’s nice to see them doing something together and sometimes I even get a chance to just sit quietly and have a cup of tea. It means a lot to watch my daughters being happy, doing something they love and interacting with other people, just like other children. 

“The Spread a Smile sessions are so valuable to Folakemi as they belong to HER. They are about her and no one can take them away from her. Folakemi loves everyone at Spread a Smile and has said that she would love for someone like Kiri to be with her all the time as she is always smiling and singing. 

“It has meant the world to us as a family to have the support of the team at Spread a Smile. We see Folakemi laughing and happy and enjoying different experiences and Spread a Smile brings so much vibrancy and joy to our lives. They really do go above and beyond to support the kids, knowing everyone by name and celebrating whatever the kids are doing and can achieve. We come away feeling so great every time and Folakemi is proud of everything she achieves and creates with Spread a Smile. 

“The team has shown such kindness to us, sending a surprise balloon for Folakemi’s birthday. None of us knew it was coming and it was so exciting receiving the box and not knowing what it was. Then the ‘walking’ unicorn balloon popped out of the box and Folakemi was over the moon as unicorns are her favourite. It became her best friend and she took it everywhere. It was a personal and thoughtful gift, as are the Smile hampers they send out at Christmas time. Spread a Smile really does make a real difference and are so kind and supportive.

“Spread a Smile shines a little light through all the worry and darkness, particularly at Christmas time. Folakemi and her sister Tempitope are so looking forward to receiving their Smile Hampers. The excitement and joy are wonderful and it brings a tear to my eye watching them laugh and unwrap their gifts. It means the world to all of us.”

As Folakemi herself said, “I love Spread a Smile, the people, the art and all the fun things. They make me happy.”

Please donate £25 to help fund a Smile Hamper for children like Folakemi and Temitope. Thank you.

When Amelia was 8 years old she started to experience headaches and stomach pains at night. Amelia’s symptoms continued and her family started noticing that she didn’t seem to be growing, wasn’t eating properly, started to lose weight and kept losing her balance and falling over. 

Knowing that something wasn’t right, Amelia was referred to a Specialist at Colchester Hospital for an MRI scan, which revealed a large mass on her brain and treatment starting in November 2022.  As the mass was very close to her eyes, her scans were sent to Great Ormond Street Hospital (GOSH) and Addenbrooke’s Children’s Hospital for review, after which the family were told that the mass was in fact cancer. Amelia was diagnosed with Germinoma, a brain tumour, in January 2023.

Six cycles of chemotherapy treatment followed, during which time Amelia was often very unwell, in and out of hospital for blood transfusions. It was an extremely emotional time for Amelia and her family, with Amelia just wanting to be at home, surrounded by her family.

In April 2023, Amelia was referred for a three-week course of Proton Beam Therapy at University College London Hospital (UCLH), during which time Amelia and her Mum stayed together in London, going into hospital every day for treatment.  

Amelia’s Mum, Gemma said, “It was a really difficult time for us all, with Amelia and I in London away from the rest of the family. We were in and out of hospital so much and couldn’t be together as a family. Amelia was often so ill that we weren’t able to do anything else at all.”

It was during this time that Amelia’s family were introduced to Spread a Smile. 

Gemma said, “My husband Scott, met some of the Spread a Smile team in hospital. They introduced themselves and said they would love to support us, mentioning an upcoming day out at Mildreds restaurant and another trip to see Frozen at the theatre.

“It really was amazing as the outings gave us the chance to do something together as a family. We went to see Frozen just after Amelia finished her protons treatment and it was brilliant to have her sisters join us for such a special day out.

“We didn’t have a lot of money, as Amelia’s Dad had given up work to look after our other children whilst I was with Amelia in London. Things were really tight and we were under a lot of pressure. Getting to go to Mildreds and Frozen were such treats for the whole family and something we would never have been able to afford. Spread a Smile gave us a place to be together, not having to worry about money. There was entertainment, magic, singing and so much more to help cheer us all up and forget about the other stuff we were going through. We were so well looked after.

“Just seeing the looks on the children’s faces was amazing. The girls particularly loved the face painting and balloon making and the Lola’s cupcakes were incredible – always such a treat. What was nice for me was being able to just sit down, relax for a bit and watch my children together, just having fun and smiling. We also went along to the Spread a Smile Summer party in June and that was a beautiful sunny day for the whole family. We had so much fun!”

Amelia rang the bell at Colchester Hospital in July 2023 to mark the end of her treatment for cancer, with Spread a Smile continuing to be there for Amelia and her family.

“In August we had the opportunity to go to the Lake District as a family for the Spread a Smile residential trip and we jumped at the chance. It’s not something we would’ve been able to do otherwise and we were so excited to spend time together and go away together after Amelia finished her treatment.

“Spread a Smile put on such an amazing trip! Everything was organised for us and there were adventures, fun sessions and so much more to enjoy. We met and learnt from other families on their cancer journeys and Scott and I also got to chill out for a little bit in the evening which was so special. The kids still say it was the best holiday they have ever had and we will never forget sitting out at night watching the shooting stars. Such special moments that we will never forget. 

“Seeing Amelia go through her treatment was so hard. She was so sick and there was so much worry and pain. Being away from the family was extremely difficult and a very lonely time for me. Spread a Smile brought light back into lives. They  gave us something to look forward to and a place to be together again as a family. We will forever be grateful for this amazing charity and their amazing team.”

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