Case Study

Folakemi

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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

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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

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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.

Your Stories - Aditi

Aditi

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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.

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