Case Study

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.

Your Stories - Amber

Amber

1024 819 tanmay

At just 21 months old, Amber was diagnosed with retinoblastoma, a form of eye cancer. On her first day at the Royal London Hospital, Spread a Smile was visiting children on the wards with one of the charity’s therapy dogs. On what was an incredibly daunting day, the impact of meeting our team helped to distract and relax Amber during this first visit to the hospital.

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

For Amber’s parents, Pippa and Glenn, seeing their daughter enjoy rare moments of fun by partaking in play and interactive entertainment is uplifting and helps them support Amber through her healthcare journey.Pippa explains, “Amber loves singing with your entertainers – especially your musician, Sar. For us all to sing along together and be happy, even in such difficult circumstances, is such a release. We love to see her smiling and reclaiming her childhood. Spread a Smile is so valuable for parents as well as for children.”

When the pandemic began, Amber still had to go into GOSH for frequent treatment for her eye. As playrooms were closed and visitors prohibited during lockdown, not having Spread a Smile around felt like a massive void for all the family. However, Spread a Smile’s digital services including virtual entertainer visits and our Smile TV, full of pre-recorded entertainer videos, provided a valuable break to the monotony of the hospital environment. After every procedure Amber would have to lie still for four hours, so having access to Spread a Smile’s online services was an amazing distraction from her discomfort.

“When we heard that Spread a Smile would also record a personalised video message, just for Amber, we jumped at the chance. We’ve watched the video so many times. Amber has also joined group virtual visits with entertainers and other children and she’s really benefitted from the peer support. In her world, she’s the only person she knows who goes to hospital and they help her feel a bit more ‘normal’. For everything that Amber has been through, Spread a Smile is a happy part of hospital and such a positive memory.”

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

Lydia

Lydia

1024 819 tanmay

At the age of four, Lydia was diagnosed with Multiple Endocrine Neoplasia Type 1, an extremely rare disorder that causes tumours in glands and parts of the small intestine and stomach. At 12 years old, she was diagnosed with Metastatic Neuroendocrine Cancer, which had progressed at an unexpected rate. As a result, Lydia endured multiple invasive surgeries to remove tumours, daily medication and ongoing hospital treatment to control the spread of the tumours.

One of her most recent medical treatments involved a dose of radiation so intense that she had to remain in her hospital room alone behind lead lined doors, to prevent any radiation contamination.

Lydia’s diagnosis, treatment and long and repeated hospital stays have dominated her life. She missed so much of her young life and so much of what other teenagers take for granted. The need to be isolated during the Covid-19 pandemic further impacted her feelings of separation and isolation.

Meeting Spread a Smile has made a hugely positive difference for Lydia and her family. Our in-person and virtual visits have provided much needed interactions, activities and peer support that has helped transform her emotional wellbeing.

Suzanne, Lydia’s Mum said, “Pain and treatment has been really upsetting for Lydia, and consequently, me. When your child doesn’t feel well and they are very vulnerable and you can’t hug them, it is the hardest thing. It goes completely against a mother’s natural instincts. But this all changed when Spread a Smile visited. Magicians doing magic tricks, fairies singing and artists face painting with glitter and gems – it brightened up our day. They lifted Lydia’s mood and gave us something else to think and talk about.  During her time in hospital, in isolation and when recovering at home, Spread a Smile provided Lydia with many vital distractions. You have been a lifeline to both Lydia and her brother, Samuel, during such difficult times. When you have a child going through cancer treatment, any support means so much more.”

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

Your Stories - Niko

Niko

1024 819 tanmay

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

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

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

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

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

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

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

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

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

Your Stories - Aditi

Aditi

1024 819 tanmay

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

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

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

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

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

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

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

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

Your Stories - Jacob

Jacob

768 614 tanmay

When Jacob first fell ill at 18 months old, his Mum, Emily, took him to A&E as a precaution. Unfortunately, what started as a high temperature led to an extended hospital visit and a vast number of tests in which doctors tried to understand what was wrong. Jacob went through lumber punctures, CT scans, blood and fluid tests, but still doctors struggled to find an answer for his condition.

Eventually, after having been moved to Great Ormond Street Hospital (GOSH), doctors diagnosed Hemophagocytic Lymphohistiocytosis (HLH). As a doctor told Emily at the time, “there’s more chance of winning the lottery than being diagnosed with HLH”.

The only treatment for this condition is chemotherapy and a bone marrow transplant, so the search for a donor began immediately with Jacob having a transplant in March 2019. He was then kept in isolation on Fox ward at GOSH for three months. When he eventually came home, he was still dealing with complications such as Haemolytic Anaemia, which meant he returned to the hospital often. This continued throughout 2020 and Jacob spent so much time in hospital and was reliant on blood transfusions and steroids and even had sepsis. Doctors decided at this point that he needed a second bone marrow transplant to try to improve his condition.

The transplant eventually happened around Christmas 2021. Jacob spent another two months in isolation in hospital and has been living with post-transplant complications ever since. He is still very much in isolation at home until his condition improves and Jacob and Emily still go into hospital around once a month.

We first met Jacob at GOSH when he was 18 months old when we would come and sing with him. As Emily said, “He was a baby on the bed and he’d been in hospital for 10 weeks. Someone from Spread a Smile came in to sing with him and it really brightened his day. After that he would get out of bed and walk down the corridor on Lion ward. We also did magic which helped to build his confidence.

“The virtual visits were also so important. We could never do baby classes or groups so Spread a Smile magic, art, singing and dancing kept him entertained. You have been supporting us now for four years. He even did a Lola’s cupcake decorating session – he was so ill that day but it got him out of bed to do an activity and put a huge smile on his face.”

At one point, Jacob was unable to leave his hospital room for 70 days, so the ability to bring some creativity and colour to his space was vital. That’s why we decorated the windows in his room. He gave us very exact instructions on what he wanted his window to look like, which involved his favourite characters; Sooty and Sweep riding on his favourite train. He had brought all the characters from home to make sure we got the drawing just right. We did the same for Jacob and others on Fox ward over Christmas as well.

Emily said that Jacob was so excited to come to our summer party in August 2022. This was only the second party he has been to, after he came to one of our events last year. Now being five years old, and having not experienced school or nursery, the relationships that Jacob has with our entertainers, staff and his medical team are incredibly important.

Getting to know Jacob and Emily has been wonderful, and being able to make a difference in their lives has been a real privilege. We’re excited to see Jacob again and hopefully host him at more parties to come.

Emily said, “Spread a Smile is so important to my family. Even at Christmas you sent a box of goodies. Things like that make such a difference when your child is going through such a hard time and your child is so seriously sick. There are no other organisations out there that provide the entertainment that you guys do.”

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

  • 1
  • 2