Tilly Simpson, was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) in June after initially developing a squint in her right eye, for which she was prescribed glasses.
The five-year-old’s main hope is for £100,000 to be raised that will enable her to travel to a clinic in Texas – currently the only place where treatment is available.
Football stars including Hibs boss Neil Lennon, Hearts legend John Robertson and Northern Ireland manager Michael O’Neill came together yesterday at the Kenny Waugh memorial golf day at Duddingston Golf Club to raise money for the youngster.
Jocelyn Torres, who is the partner of Tilly’s father, Lewis, has set up the website Raising Hope for Tilly to highlight the youngster’s condition and raise funds.
Writing on her blog, Jocelyn, from Linlithgow, said: “We will never be ready to lose Tilly, and we won’t.
“Neil Armstrong lost his daughter to this terrible disease in 1962, as have countless since.
“How is it possible that DIPG survival rates still stand at zero and the official prognosis for life expectancy is roughly one year, which has a 0.9 per cent cure rate?
“If you know this little girl, she will touch your heart, as I know she has already touched and stolen a lot of others.”
DIPG is extremely rare and occurs almost exclusively in children aged 10 or less.
“I know Tilly is the miracle child, we have to believe it, and we will help her show this to the world,” Ms Torres added.
“At the moment there could be a chance through clinical trials, alternative treatments and other non-common solutions. We have been in touch with specialists around the world including those in Paris, Sydney and Barcelona and we are hoping that Tilly meets all the criteria to qualify for the treatment she so desperately needs.
“Our target currently stands at £100,000 and we are incredibly grateful for all the fundraising and support. Every penny that’s being donated is bringing us a step closer to a potentially much longer and healthier life for wee Tilly.
“At this moment in life, yes, we sound desperate, but we are, and DIPG needs a cure.
“I am writing this on behalf of my partner, Lewis Simpson, Tilly’s dad. I do love this little girl, and in case you don’t know, she really is a true princess and you would only agree with me if you met her.”
A signed football boot from Celtic legend Henrik Larsson and a signed driver from Scots golfer Stephen Gallacher were among the items to be raffled at the event.
Among those teeing off were Aberdeen great Willie Miller, former Dunfermline boss Jim Leishman and ex-Hibees John “Yogi” Hughes and David Murphy.
Hearts legend, John Robertson said: “One of the best things about today, is getting to meet up with players you haven’t seen for ages. Players that you played against many moons ago are here, but the important thing is it’s for a really good cause.
“It goes under the Kenny Waugh Memorial Golf Day which is fantastic in one way – but the fact we are also raising money for this young girl is the main thing because we want to try and make as much money as we can for the family to help them get the treatment her illness requires.”
Event organiser, Keith Sands, said: “We organised this event for the first time last year and it was a big success. We managed to raise £12,500 last year and we’re hoping to beat that this year.”
Michael O’Neill said: “It’s good to see people I haven’t seen in a long time.”