Imogen was just 6 months old when she was diagnosed with a low grade glioma – a type of brain tumour – resulting in her transfer to Bristol Children’s Hospital for surgery within 24-hours of diagnosis.
Although the majority of the tumour was successfully removed, Imogen suffered a stroke during surgery resulting in life-changing disabilities. The family’s world was thrown into chaos as they started to adapt to their new reality, with Mum Emma saying,
“We knew life had completely changed. We were told that alongside ongoing treatment for the brain tumour, the most we could expect was for Imogen to be able to breathe on her own and potentially swallow. Imogen is non-verbal and reliant on us for every aspect of her life but has completely exceeded expectations, being able to sit unaided and drink and eat herself.
After her initial surgery, Imogen underwent 18 months of chemotherapy, spending months in and out of hospital as she was so sick. In the following years, Imogen underwent two further brain surgeries after the tumour grew, followed by further rounds of chemotherapy.
“When Imogen was 12 years old, doctors discovered that the brain tumour had grown again but that surgery wasn’t an option as the tumour was growing into the middle of her brain. We were transferred to University College London Hospital (UCLH) for six weeks of proton beam (radio)therapy under general anaesthetic. It was during this time that we first met the charity Spread a Smile.
“We would see the Spread a Smile entertainers on the wards – fairies, therapy dogs and magicians – bringing so much joy and fun to children and families undergoing treatment. Imogen had to wear a special radiotherapy mask during her treatment and one of the Spread a Smile artists kindly decorated it for her with hearts and stars, making it so much less clinical and more child friendly. It made such a difference during that very difficult time.
“After Imogen’s treatment had finished she was quite poorly, experiencing huge fatigue. Life stuck at home was very boring for her and it was at this point that Spread a Smile became a lifeline to us. We signed up for their weekly virtual one-to-one entertainer sessions and they quickly became the highlight of Imogen’s week. Imogen is really social and she literally lights up when the entertainers start chatting and singing with her. I might not hear her vocalise for a whole week, but then suddenly during the half hour online with the Spread a Smile singers and fairies, she would have the biggest smile on her face, singing along in her own way.
“Imogen is now able to access school for a while during the week, but we continue our sessions with Spread a Smile. She can get so bored
at home and it’s lovely to watch her join in, engage and have so much fun. It literally brings a tear to my eye and means so much to me as a Mum to be able to experience these glimmers with her.
“Due to the level of Imogen’s disabilities, a lot of support offered by other charities isn’t suitable for Imogen, but Spread a Smile meet Imogen in a beautiful way that reflects her abilities, ensuring she gets the most out of her sessions – it really is very special.
“Imogen and her two siblings were all sent Smile Hampers by Spread a Smile at Christmas and Imogen’s box was so carefully curated and well thought out, full of gifts that she could actually use and enjoy. We were so grateful for that.
“We’ve also joined some of Spread a Smile’s family events including a theatre trip with the whole family to see The Lion King in the West End and also the Winter Party. We were able to have much needed days out with the whole family and they are a brilliant way to meet with other children and families we’ve met in hospital. The events are a safe space to share experiences with people who understand what you’re going through. At the Winter Party Imogen just loved all of the music and entertainment – watching Anna and Elsa perform and eating cake. Her siblings got stuck in with all of the activities there, from face painting to arts and crafts. There really was something for the whole family.
“Spread a Smile has been our constant in recent times providing such wonderful support, fun and solace. As we continue to navigate life managing Imogen’s brain tumour and disabilities, it is nice to know that they are by our side, helping to provide some very special moments full of smiles.”
Just £30 will help fund an entertainer visit for a child in hospital.
Please help ensure we can continue to support children and young people like Imogen and their families by donating today. Thank you.