Lily’s Rainbow Fund launch to remember Lily Harley - the little girl who lit up Louth

Four-year-old Lily Harley, who inspired the community of Louth with her bravery, passed away in March after battling Grade 3 Ependymoma, a rare type of brain tumour, and now her brave parents will be launching Lily’s Rainbow Fund to raise money in her memory.

Lily was just three years old when she was first diagnosed in January 2022, and she underwent two surgeries to remove the tumour and proton beam therapy in Germany for two months with mum Emily Morton and dad Josh Harley by her side.

She then endured more gruelling chemotherapy at Sheffield Children’s Hospital, which finished in October and she was declared to be in remission.

Sadly, in January this year, it was discovered that Lily’s cancer had returned and was terminal, and her parents embarked on a fundraising mission with Lily’s godmother Brioney Johnson to make as many memories for her in their remaining months together, with a GoFundMe page raising a staggering £64,000.

Thanks to these generous donations, the family were able to enjoy a number of memory-making holidays and trips, including a visit to DisneyLand Paris, West Midlands Safari Park, and an exclusive screening of her favourite film Frozen.

The town then rallied round give Lily the fourth birthday party she deserved, which saw many local businesses contributing and more than 300 toy unicorns donated to Lily’s party, and a number of 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 footballing colleagues, and a variety show organised by Stuart Spendlow of Grimoldby Primary School.

Sadly, Lily’s condition deteriorated throughout March, and she passed away at home on Tuesday March 28.

Emily said: “In true Lily style, she was smiling, singing, talking about her dogs, and playing until the very end.

“Although Lily’s time on Earth ended far too soon, she made an impact to last a lifetime. The happiness and love that she spread spoke volumes and she was a blessing.

"As her parents, we hope that her life and legacy continue to be impactful and we will strive to make a difference to others faced with our situation.”

Emily and Josh will be launching Lily’s Rainbow Fund today (June 28) – exactly three months since Lily’s death – with the aim of raising £25,000 in the first year for OSCAR’s Paediatric Brain Tumour Charity.

Working with OSCAR’s, Emily and Josh are aiming to help fund support and care programs for children with brain tumours and their families, raise awareness of signs and symptoms in children, and support research into better treatments.

They have a number of fundraising activities lined up over the next few months, including a charity football match, a family fun day in September to mark six months since her passing, and a mountain climb, with dates to be confirmed.

Emily is also planning to take part in a skydive from 13,000ft to launch the fundraising campaign in Lily’s memory.

Phil Martinez, charity manager of OSCAR’s Paediatric Brain Tumour Charity, said: “We have been deeply affected by Lily’s story and are so grateful that they wanted to work with us to support children and families.

“For Emily and Josh’s thoughts to immediately turn to other children and families while they are still grieving for their own child is beyond inspiring.

"Lily’s Rainbow Fund is named to echo her love of rainbows, and also because the funds raised can hopefully bring sunshine to a stormy time in people’s lives.

“We are excited to see the events Lily’s Rainbow Fund have planned and welcome them into the OSCAR’s family. It will be fantastic to have them join us on our events such as the Edale Skyline Family Mountain Challenge in May 2024 and our Inflatable 5k run.”

To donate to Lily’s Rainbow Fund, visit the website at www.justgiving.com/campaign/lilys-rainbow-fund