A Linlithgow family have been left heartbroken after young Tilly Simpson lost her battle against an inoperable brain tumour this week.
Five-year-old Tilly lost her brave fight in the early hours of Tuesday.
Her story touched hearts across the globe after she was diagnosed with a highly aggressive DIPG (Diffuse Intrinsic Pontine Glioma) brain tumour in June this year.
Devastated dad Lewis (28), who lives in Linlithgow, and mum Michelle Sharkey, who Tilly lived with in Ayr, were told her chances of surviving were just above zero per cent.
Desperate to save their daughter, the couple and other family members and friends set up a fundraising effort – Raising Hope for Tilly – to pay for a combination of targeted gene therapy and antineoplastons in Texas, USA that could have broken down the tumour and prolonged her young life.
Together with the help of Lewis’s friends, grandparents Ann McCormick and John Simpson and Michelle’s family and friends, hundreds of people donated to the campaign which has raised over £200,000.
Some of the money was used to send Tilly to Texas with Lewis and Michelle to receive the treatment which cost around £17,000 a month for six weeks before returning to Scotland in September.
Tilly carried on the treatment here, however, following a seizure in late October she was admitted to intensive care at Glasgow’s Queen Elizabeth hospital before the family was told to expect the worst.
Tilly kept battling after another seizure and briefly stabilised again, but the family brought her home a week past Monday where she was surrounded by loved ones in the last week of her precious young life.
Her parents were too upset to talk, but a family member told the Gazette this week: “Tilly was so brave she just surprised everyone at the way she would bounce back.
“She never complained once about her situation. It was absolutely remarkable how she came through it all. She faced it all with so much courage and bravery and was so strong.
“Throughout her diagnosis she would dance around taking everything in her stride. Her strength was unbelievable. She had a cheeky little character and loved being a princess – Princess Tilly. She loved music, One Direction and of course Paulo Nutini who so kindly came to visit her in hospital, she loved that.
“We will all miss her so much and she will remain in our hearts forever.”
The remaining money from the fundraising campaign will be used to help others.
The family member added: “We really could not begin to thank people enough for the support they have shown Tilly and the family during all of this. It has been overwhelming and we will be forever grateful.
“To raise such a massive amount of money shows how much people care and how communities come together when people need them. The money that is left over will be given to raise awareness of the type of brain tumour Tilly had and to help families who find themselves in a similar situation so they can get treatment for their loved ones.”
Tilly’s funeral is being held today (Friday) in Ayr at the Cathedral Church of Saint Margaret at 1pm. In honour of Tilly the family is kindly requesting people to add a little pink to their attire.