The mother of a four-year-old girl who died from a brain tumour in March is to skydive from 13,000ft to launch a fundraising campaign in her memory.
Lily Harley, of Louth, near Grimsby, was diagnosed with a cancer rarely seen in children after her parents noticed a change in her behaviour over Christmas 2021.
Despite dozens of treatments and receiving the all-clear late last year, the cancer returned and Lily died on 28 March in her parents’ arms.
Lily’s Rainbow Fund launches on Wednesday 28 June – exactly three months since Lily’s death – with the aim of raising £25,000 in the first year.
Mum Emily Morton, 26, and partner Josh Harley, 28, have set up Lily’s Rainbow Fund to raise money for other children and families who find themselves in the same situation.
Working with OSCAR’s Paediatric Brain Tumour Charity, Emily and Josh want 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, including a charity football match, a family fun day in September to mark six months since her passing, and a mountain climb.
Lily was first diagnosed with the disease in 2022 after her parents noticed changes in her behaviour over Christmas 2021.
An MRI scan showed she had a rare form of cancer, ependymoma, which grows on the brain and spinal cord. It is rarely seen in children.
After 20 hours of surgery at Sheffield Children’s Hospital, Lily’s cancer was removed.
Lily was asked to take part in a clinical trial in Germany, and following 32 treatments in the city of Essen, it appeared as though the cancer had gone. A routine check-up in September showed she was all clear.
Sadly, another MRI scan at the start of this year revealed her cancer had returned, with new tumours at the base of her back, on her chest and in parts of her brain fluid.
The form the cancer had taken meant it could not be treated and Emily and Josh had to prepare to say goodbye to their young daughter. Friends and family raised money to allow the family to have fun experiences together such as a helicopter ride with Elsa from Frozen and a VIP Safari trip.
Lily’s mum Emily Morton 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.”
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 go to https://www.justgiving.com/campaign/lilys-rainbow-fund
