Case Study

Talulah

800 530 Susie

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.”

Ajooni

800 530 Susie

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 W

1024 678 Susie

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.

Freddie

800 530 Susie

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.

Evie

800 530 Susie

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.”

Folakemi

800 530 Susie

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.

Amelia J

800 530 Susie

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

800 530 Susie

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.

Kaiden

Kaiden

1024 683 Susie

In November 2021 when Kaiden was just six years old, he started suffering from head pain, nausea and double vision. His GP initially diagnosed migraines, but as his symptoms continued, in May 2022 Kaiden was referred to Wycombe Hospital for an MRI scan. Within 48 hours, his Mum Kathryn received a call to say that they had found a mass in his brain. 

Kaiden was immediately transferred to John Radcliffe Hospital for further MRI scans and an urgent operation to fully remove a brain tumour called a medulloblastoma.

After his initial recovery, the plan was for Kaiden to start Proton Beam Therapy at University College London Hospital (UCLH) to ensure the removal of all cancerous cells. However this was delayed for four weeks following an infection which saw Kaiden rushed back into hospital for treatment and to drain fluid from his head. 

In September 2022, Kaiden along with his Mum, Dad and two youngest siblings moved to London to start daily proton beam therapy under general anaesthetic at UCLH.

Mum Kathryn said, “It was during our daily visits to UCLH that we met Spread a Smile. The team were visiting with Buddy, one of their Therapy Dogs. Kaiden was in recovery from general anaesthetic and wasn’t particularly bothered about seeing anyone. However, within a couple of minutes of meeting Buddy, he was sitting up in bed, stroking and playing with Buddy and giving him treats. Kaiden’s recovery from anaesthetic was super quick that day! He just wanted to get up and absolutely loved being with Buddy. It was wonderful for me to see Kaiden happy and enjoying something different. When you spend so long in hospital, anything that breaks the monotony is a treat.”

Whilst Kaiden and his family were in London, Spread a Smile invited the family along for an outing to see The Lion King on stage in the West End. 

“Because Kaiden was under general anaesthetic so often, our days in hospital were long as he was often asleep or in recovery when people came to visit. Being able to go to the theatre as a family for such an amazing day was incredible and an experience we will never forget. The trip coincided with Kaiden’s proton beam therapy coming to an end and in the lead up to starting chemotherapy. It was wonderful to have something special to do and it was a magical day.”

Kaiden started chemotherapy at the end of 2022, meaning he had to stay at home in between cycles to help protect his immune system. It was at this point that the family discovered Spread a Smile’s virtual sessions.

“Spread a Smile’s online sessions have literally been a lifeline for Kaiden. He looks forward to them every day taking part in as many as possible from Magic with Makaton to singing, art and cupcake decorating. He often does two a day! Even when he missed the cupcake session due to an operation, we took the kit Spread a Smile sent us into hospital and once he had recovered Kaiden spent a lovely couple of hours decorating the cakes. It was a great distraction for him. 

“As a parent, Spread a Smile means the world. Kaiden can’t go to school or see his friends and not being able to go anywhere is tough for him. But through their online sessions, Kaiden has made friends. He chats to people, engages with them, laughs and can just be Kaiden again. It’s lovely to see and I don’t know what we’d do without them.”

As Kaiden himself said: “Spread a Smile do what they say – they make me smile every day!”

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

Your Stories - Lottie

Lottie

577 461 tanmay

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

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

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

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

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

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

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

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

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

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

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

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

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

  • 1
  • 2