Case Study

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.

Teddy was just nine months old when he was diagnosed with acute myeloid leukaemia in early 2023. Having struggled through illness after illness with his symptoms worsening each time, Teddy ended up in hospital with pneumonia and on oxygen support, before blood tests revealed his devastating diagnosis.

Teddy was transferred to Great Ormond Street Hospital (GOSH) the very next day and sent to theatre the same evening to have a Hickman line fitted and begin chemotherapy.

10 days of chemotherapy treatment followed, then a four to five week recovery period before a second, more intense round of chemotherapy and a further 6 to 8 weeks recovery. Teddy spent a large majority of this time in hospital, often extremely unwell from the side effects of his treatment. 

Spread a Smile first met Teddy and his family at GOSH during his first round of chemotherapy.

Teddy’s Mum, Katie said, “It was such an intense time, with our lives turned upside down, living away from home whilst Teddy was in hospital. When we were on Elephant Ward, a Spread a Smile fairy came to visit Teddy in his room and sang nursery rhymes to him. He loved it and it was like a breath of fresh air.

“Since that first visit we made sure to see the Spread a Smile entertainers whenever they came in! It is extremely tedious being in hospital all day, trying to entertain a 9 month old, with nothing much to do. We looked forward to their visits, to see Teddy’s face light up and have something new to distract him. It was lovely for his Dad and I to just sit back and watch Teddy smile and clap along to the singing. 10 minutes of pure joy.

“Having been in hospital for such a long time, Teddy’s physical development was delayed, but his cognitive development has been brilliant thanks to the visits from the Spread a Smile fairies and musicians. They gave him something to focus on and learn from. To start with he would smile and clap to the songs, but the more we saw them, the more he would learn, copying all the actions to songs. It’s been really valuable to help stimulate his development.

“We’ve also loved the Therapy Dog visits as we have a dog at home, so whenever Teddy saw one of the Spread a Smile dogs, his face would just light up. He loved stroking them, giving them treats and rolling the ball to them. It was wonderful to watch.”

A bone marrow match was found in the Spring and Teddy received a bone marrow transplant at the end of June, after which he fell quite ill with sepsis. 

“It was such a worrying time for us, with Teddy so unwell and being away from home. When Teddy first moved into his room on the transplant ward, his room was covered in mermaids and we wanted to try and make it feel more personal and a bit more like home. One of the hospital Play Specialists mentioned that there was a Spread a Smile artist, Marina, who could paint some murals especially for Teddy.

“When Marina came to see us, we talked about what Teddy would like. Teddy is our ‘Super Ted’ and so she painted his very own Super Ted on his window. It was an exciting and very special moment. We are on a journey of a lifetime and it feels like we are leaving our stamp on the room for others to enjoy, hopefully bringing some good luck. I feel like it represents our boy’s courage, strength and bravery, as well as the unconditional love we feel for him.

“Spread a Smile really is a wonderful charity and we witnessed so many children benefiting from the visits. For children (and their families) going through such traumatic experiences, Spread a Smile really does brighten up the day. They make you feel special during a very tough time, bringing out smiles which would otherwise be few and far between. It means a lot.”

Following his bone marrow transplant, Teddy turned a corner in early July, with the family hoping that discharge will soon follow.

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

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

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

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

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

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

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

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

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