Sister and brother Emily and Luke were both diagnosed at birth with Cystic Fibrosis, a condition that causes sticky mucus to build up in the lungs and digestive system, leading to lung infections and problems digesting food.
Mum Juliet said: “Emily (our eldest) was diagnosed through the heel prick test at birth. I had no idea what Cystic Fibrosis was and then a nurse from Great Ormond Street Hospital (GOSH) arrived at the door to talk me through it, helping us to understand what the condition is and what might happen. The next day, we were in hospital, meeting Consultants and the support team.”
By the time Emily was three years old, her health started to decline, leading to the start of frequent hospital admissions. Juliet was 34 weeks pregnant with Luke when their hospital stays started. She would take Emily into hospital every three months for two weeks at a time and life revolved around maintaining medication, clinical interventions, managing coughs and colds and trying to ensure Emily was thriving.
“Emily’s stays in hospital were very demanding, particularly in the early days when she was so little. She had a PICC line inserted for IV antibiotics to be pumped into her system. We had physio sessions, gym sessions, meetings, talked at length with the Consultants and had many discussions as to how best to manage Emily’s condition and health. We wouldn’t have been able to cope without them. We also had to manage the additional stomach and liver problems which often come with a diagnosis of Cystic Fibrosis.”
“Being in hospital for a long time was a very challenging time for all of us. Emily needs to be in isolation, so we couldn’t mix with other patients or families to reduce the risk of cross-infection. Luckily GOSH is amazing at helping the children they care for to still be children, even when they are really unwell. This is when they introduced us to Spread a Smile.
“Pre Covid, the Spread a Smile entertainers – singers, magicians and artists – would visit Emily in her room. When you’re with your child 24 hours a day, unable to see friends or family, it is an absolute lifeline. They brought joy, cheer, connection and something interesting in the day which lifted our spirits at a time when you feel so cut off from the outside world.”
“During the Covid pandemic, Spread a Smile adapted very quickly to continue their support online. Isolation during the pandemic was even worse. I was in hospital with one or both of my children 14 times during this time and at times we weren’t even allowed out of our room to go to the kitchen because of the serious infection risk. The Spread a Smile online sessions meant we could connect with a friendly face. Taking part in the activities was an amazing creative intervention at a time when the kids were missing out on so much play.
“External, creative organisations such as Spread a Smile play a crucial role in supporting the wellbeing of a child whilst in hospital. It means the hospital can focus on the medical needs and also ensures that all of the child’s needs are taken care of.
“When she was little Emily loved face painting and the fairies. One time a Fairy gave her some magic dust which she kept for years and years. She loved the singers too – especially the funny ones who made her laugh!
“The amazing thing is that Spread a Smile adjusts and reacts as a child gets older, responding to their individual needs and offering different activities for different ages. So now, Emily is more into the online sessions and groups. She might ask the singers to sing Ed Sheeran or Adele as opposed to a nursery rhyme and they just do it.”
“During Covid lockdown, when we were very isolated and shielding, Spread a Smile didn’t forget us. They delivered birthday presents and Christmas hampers to help cheer up the children. Those moments were a lifeline.”
Emily’s brother Luke, was also diagnosed with Cystic Fibrosis at birth, adding an additional layer of complexity and stress for the family due to the risks of cross-infection and additional care needs.
“Initially, Luke’s condition didn’t manifest itself as complicated, but since the age of seven, he has struggled more. At one point before lockdown, Luke caught an extremely bad Cystic Fibrosis related bug which was very difficult to get rid of. He started a period of intensive treatment in hospital, spending 8-10 hours a day isolated in bed in his room, attached to an IV line. For an active boy it was extremely difficult, really impacting his state of mind and wellbeing. So he started online sessions with Spread a Smile and they were amazing. He particularly loves the art sessions and now attends weekly one-to-one and also group sessions.
“Spread a Smile plays a vital role for Luke and the sessions have become a regular feature of his week. As they are online, he can take part and connect wherever he is – in hospital or at home. He has built relationships and they have remained consistent which has been important when he has to deal with so many other professionals elsewhere.
“When the children were well enough, we also went on a few theatre trips with Spread a Smile. They always do them with such style – entertainers, gifts, snacks, treats – making everyone feel so special and helping build positive memories. When you have so many things that are difficult going on, it’s wonderful to have something positive to do and think about. It helps to make the difficult times more manageable.”
Both Emily and Luke’s health has improved since starting new medication in 2022, meaning less time in hospital.
“Our relationship with Spread a Smile still continues to this day and as a family we are so thankful for everything they do. (Emily turned 13 and Luke 10 in early 2023). We are able to engage with stuff that makes a hugely positive difference to Emily and Luke’s wellbeing and for a parent, that is absolutely amazing.”
Luke says about Spread a Smile: “They are really funny and I like hanging out with them. It’s really fun. It helps me when I’m lonely as it makes me not feel lonely. Spread a Smile makes me feel happy inside the hospital and outside.”
Emily says about Spread a Smile: “I am so grateful that Spread a Smile has been able to provide me with support and entertainment whilst I’ve been sick and going through hard periods in my life.”
Please help ensure we can continue to support young people like Emily and Luke and their families by donating today. Thank you.