A tribute to brave, cheeky, smiley Lily

Four-year-old Lily Harley passed away in March after battling Grade 3 Ependymoma, a rare type of brain tumour, and her brave parents launched Lily’s Rainbow Fund to raise money for OSCAR’s Paediatric Brain Tumour Charity today (Wednesday) in her memory.

Her mum Emily Morton and dad Josh Harley have now paid tribute their beautiful daughter, and Emily said that Lily had always been a little character and very confident:

"She was always very outgoing and causing mischief, especially with her dogs, and she’d always be hiding things around the house!” she said, “She was always very determined, but we never had the terrible twos with her, she never threw tantrums, so I think we were quite lucky there.”

Lily was just three years old when she was first diagnosed in January 2022 after her parents noticed she was walking with her head tilted to one side.

She underwent two surgeries to remove the tumour and proton beam therapy in Germany for two months, followed by chemotherapy at Sheffield Children’s Hospital, which finished in October and she was declared to be in remission.

The people of Louth and beyond then rallied round Lily and her family when they received the devastating diagnosis in January this year that her tumour had returned, and was sadly terminal.

Emily said that even when Lily was really poorly when she relapsed, you would never have known:

"That’s why we were so shocked when we found out in February that she had so many tumours, she was just playing as normal, the doctors couldn’t believe that she was presenting so well.”

Lily’s godmother Brioney Johnson set up a GoFundMe page after her tragic diagnosis, and an incredible £64,000 was raised so the family were able to enjoy a number of memory-making holidays and trips, her favourites of which were trips to DisneyLand Paris and West Midlands Safari park, encompassing Lily’s love of Disney and animals.

The town then came together to give Lily the magical fourth birthday party she deserved, and Emily said Lily had the best time at her party.

"She loved all the attention, I think she was a bit overwhelmed to start with because there were so many people there, but she loved being centre of attention and we couldn’t have asked for a better day for her.”

A number of other fundraising events were then held in Lily’s honour, including a Brew with the Crew at Louth fire station, a charity football match by three of Josh’s football teammates, fundraising t-shirts, and a variety show organised by Stuart Spendlow of Grimoldby Primary School, making Lily something of a celebrity in the town, which Emily said Lily loved.

Julia and Alan Simmons, Mayor of Louth and her Consort, have sent their “thoughts and sincere condolences” to Lily’s family:

"I would just like to add that my husband and Consort Alan and I were so privileged to take part in the show an "Audience for Lily" which raised funds to support this lovely young girl and her family which what must have been an extremely traumatic time for them all.

"We sincerely hope that the trips, gifts, donations and all the love that was shown by the caring community in Louth will have helped to give some solace and pleasure to Lily and her family, at a time when they needed it the most.

"The Rainbow Fund for Lily is an absolutely amazing legacy. Alan and I were also invited to attend an event which was organised by the Butterfly Hospice Trust, and the family were able to release a butterfly in Lily's memory.”

Lily died at home on March 28 in her parents’ arms, and her funeral, Emily said, was of course a very sad day, but they tried to make her funeral a celebration of her life.

"We didn’t want a typically morbid funeral with everyone in black,” she said, “Everyone wore purple, her favourite colour, and we sang songs that meant something to her, like I Can Sing A Rainbow as she loved rainbows, and Let It Go from Frozen, and we had lots of flowers, balloons, and bubbles.

"Her wake was at the Priory Hotel in Louth and we wanted her favourite foods, so we had loads of burgers, hot dogs, and chicken nuggets with a sweet table with chocolate brownies. We tried to capture Lily’s essence.”

Now, Emily said, she and Josh are trying to find a semblance of normality again, with the launch of Lily’s Rainbow Fund to help raise money for OSCAR's Paediatric Brain Tumour Charity and Josh is shortly returning to work and Emily embarking on a new career, working for East Midlands Ambulance Service as an ambulance support crew member, with the view to becoming a paramedic.

"We have good days and bad days, but mostly we’ve been trying to keep busy,” Emily said, “We went away for three weeks after her funeral to get away from everything.”

Emily has been sharing Lily’s journey on her dedicated Instagram page at https://www.instagram.com/lilyharleysbucketlist/ and encouraging people to take a rock or pebble painted by Josh’s grandmother and leave it for Lily somewhere special.

To date, rocks have been left by well-wishers, friends and family in London, Scotland, The Deep in Hull, and West Midlands Safari park where Lily enjoyed visits, and the Lake District, and as far afield as the Dominican Republic, Santa Monica pier in Los Angeles, Sweden, Majorca, and Barcelona.

You can also paint your own rock or pebble for Lily and send a photo of it to her Instagram page – “We want to take her all over the world, she would love that,” Emily added.

To make a donation to Lily’s Rainbow Fund, visit www.justgiving.com/campaign/lilys-rainbow-fund