Celebrating our services on Rare Diseases Day

We are very proud that Evelina London makes a difference for children with rare and complex conditions, requiring care across multiple specialties. On Rare Diseases Day, one family has been sharing their views about their care at Evelina London.

Harley, 11, was transferred from Margate to Evelina London Children’s Hospital in October 2021. He was admitted onto the Paediatric Intensive Care Unit (PICU) and put on Extra Corporeal Membrane Oxygenation (ECMO) for one month due to having pneumonia effecting both lungs.

Harley’s Nan, who cares for him during his time in hospital, said: “The Evelina London PICU ward is unfaultable. They saved his life. If it wasn’t for them, Harley wouldn’t be here now.”

Harley, who was diagnosed with CHARGE syndrome and bronchiectasis and since October 2021, has come to Evelina London every three months for intense physiotherapy and Intravenous Antibiotics (IVAB). He stays on Mountain Ward with his Nan Kim and has to have IVAB every six hours for the duration of his two week stay. He also attends the Evelina London School (Ofsted rated outstanding), while he is on the ward.

CHARGE syndrome is a genetic condition, which can cause hearing, speech and sight problems, heart defects, delayed development and a range of other difficulties.  

Harley’s Nan commented: “It is a long stay in hospital for Harley and there are extensive periods of time between school and treatment sessions, which can make the days feel really long for him. Spending time with the therapeutic play team at Evelina London keeps him occupied and makes time go by. It doesn’t make the day feel so long as it’s something different that the hospital offers to make him feel more comfortable. Harley is non-verbal and is definitely at his happiest when playing with the therapeutic play team at the hospital”.

“Harley loves to touch things and with the play team, he is allowed to touch everything - books, big construction bricks and he loves playing at the water table with all the fish, ducks and boats. Harley naturally has a short attention span but the play team at Evelina London support him to engage with the toys and explore how things work in more depth.”

“His favourite thing is playing with the fibre optic sensory lights. He can play with them for ages – just holding the light strands in his hands and moving them from one side to other, watching them change colour. He finds them very soothing and helps him feel more at ease.

“He also loves books and when the play team read aloud to him. They manage to get him involved with the story and characters. He responds really well to this - he is always highly engaged and happy during these sessions.

“Harley responds really well to the play specialists. He has got to know them well over the past year and already has his favourites! The staff have been amazing and always make him feel comfortable. It feels like a second home for him now. He is never worried about coming to Evelina London.

“He also likes the fact that he has ‘his own TV’ and is allowed to play with all the buttons, which he’s not allowed to do at home!”

“He loves to sit in the Atrium and watch the glass lifts go up and down. It’s a bright open space and doesn’t feel like a hospital environment at all. It is very child friendly and helps make our visits feel like a positive experience for Harley, not a scary one.”

Evelina London Children’s Hospital is rated outstanding by the CQC and Evelina London Children’s Hospital is the only recognised specialist children’s hospital in the South Thames region. We have unparalleled depth of clinical and research expertise in children’s services across the region. Our teams provide healthcare services to more than 104,000 children and young people every year.