Lily Harley lost her life at the age of just four following a battle with Grade 3 Ependymoma cancer, leading parents Emily Morton and Josh Harley to place mementos around the world on her behalf
Grieving parents travel the world and leave mementos in beautiful places on behalf of their late daughter.
Lily Harley died at the age of just four on March 28, 2023, after being diagnosed with Grade 3 Ependymoma – a rare type of brain tumour. Before she lost her life, Lily had she asked her mum, Emily Morton, 26, and dad Josh Harley, 28, to take her on a sunny beach holiday. Sadly she was too unwell to go.
Since her death Lily’s friends and family have been painting pebbles and taking them on their summer holidays – as a way of taking her to the places she never got to visit.
The brightly coloured stones have been taken to over 57 different locations this summer, including California, Dominican Republic, Switzerland, Tunisia and Sardinia. They have also been put in UK locations that were special to Lily, including at West Midlands Safari Park near the giraffes – her favourite animal – and at The Deep aquarium in Hull.
Lily’s parents have set up Lily’s Rainbow Fund alongside OSCAR’s Paediatric Brain Tumour Charity to raise money to support other children receiving treatment for brain tumours.
Emily, who works in ambulance support crew, from Louth, Grimsby, said: “Lily was full of life. ‘She was always happy, laughing, chatting and singing. She was extremely bubbly and sociable, with everyone she met commenting on what an incredible and polite child she was.
“When she died, we wanted to get away and go on that holiday in her honour and felt like leaving a pebble with her name on it is a way of taking her to all of the places we never got to. It’s our way of keeping her name alive and allowing her to travel with us.”
In January 2022 Lily was diagnosed with Grade 3 Ependymoma, a form of cancer rarely found in children. Herr parents had noticed changes in her behaviour over Christmas 2021. The tot appeared tired and her nursery teachers noticed that her head was tilting to the left, causing her to be off balance.
“We thought she was tired from the Christmas excitement. We sometimes look back and wish we realised sooner, but we didn’t know they were brain tumour symptoms,” Emily explained.
Lily underwent two surgeries, each ten hours long, at Sheffield Children’s Hospital, Sheffield, to remove the tumour. The tot spent a year enduring multiple treatments – including flying to Germany for 33 rounds of proton beam therapy over seven weeks – but the cancer returned. Lily died on 28 March 2023.
Emily said: “She lost the ability to do literally everything after the surgeries and had to learn to sit, crawl, walk, talk, eat, drink, swallow, everything again. The chemotherapy made her extremely weak and poorly.
“She had multiple blood and platelet transfusions as well as IV antibiotics. It made her extremely pale, lethargic and weak. It also made her extremely sick and caused multiple complications. But Lily being Lily always kept playing, going to nursery, and carrying on living her life to the best she could.”
As part of their charity fundraising efforts, Lily’s friends and family began bring painted pebbles on trips away, in her memory. Each pebble has the Instagram handle @lilyharleysbucketlist painted on so people finding them can discover more about Lily and Lily’s Rainbow Fund.
It was Josh’s Grandmother Barbra Shaw, 83, who originally came up with the idea, and there has now been over 100 pebbles shared in over 60 locations around the world.
Emily said: “We wanted to do something that would keep Lily’s name and legacy alive. We don’t want her to be forgotten, this is a fear I never knew I’d have until she died. We also want to be a part of something much bigger and help raise funds and awareness for paediatric brain tumours.
“Lily loved the beach. She loved taking her dogs and her uncles dogs to the beach whilst running around after them. So taking the painted pebbled to different beaches around the world seemed like a beautiful tribute.
“Lily was the first person to help out others, and although she was too young to understand all of this, she always felt sad when she saw other poorly children at the hospital, she was so empathetic and caring and we want to keep that going.
“We are obviously still in the thick of our grief and it’s extremely hard to process life without Lily, but if we can use our experience to help even one child and family then that helps a lot. We know that Lily would have wanted this, she’d have loved the attention and helping others.
“Nothing will bring Lily back so we need to do what we can with our experience to try and ensure as little families as possible go through this.”
Lily’s Rainbow Fund has already raised £10,000. To find out more about Lily’s Rainbow fund click here.
Lily’s pebbles locations
- Dominican Republic
- Santa Monica, California
- Lake District
- Old Man of Coniston (Emily and Josh climbed to the top)
- Barcelona
- Switzerland
- Italy
- Coniston Water
- Peter Rabbit’s Garden, Greenwich Park
- Devon
- Woodhall Spa, Lincolnshire
- Fuerteventura
- West Midlands Safari Park (next to Lily’ favourite animals)
- Scotland
- Isle of Whithorn, Scotland
- The Deep in Hull, her first post relapse day out
- Palma de Mallorca
- Sandilands, Lincolnshire
- Canada
- Turkey
- Amsterdam
- Tunisia
- Sardinia
- Lily Pond, San Francisco
- Silverstone
- Norway
- Germany
- Erasmus Park, Amsterdam
- Lytham St. Anne’s
- Yorkshire Wildlife Park
- Tenerife
- Gilleje, Denmark (placed by Marie, mum of Oscar Hughes, founder of OSCAR’s PBTC along with stones for her sons and husband)
- Lanzarote
- Costa Adeje, Tenerife
