Run 1000km’s for Damien & DMG research

My name is Layla Kelly and on Tuesday 5th November 2024 I will begin running 10km’s a day for 100 days to raise money to assist with my partners medical costs & future research for DMG.

Just a few weeks ago, our world was shattered when Damien, who is only 26 years old was diagnosed with a grade 4 diffuse midline glioma (DMG/DIPG), an aggressive and devastating form of brain tumour.

Damien is and always has been healthy, fit and full of life. One Saturday after a football game Damien became acutely unwell and a CT scan revealed he had a bleed in his brain. His doctors suspected a lesion underneath but could not be certain until the blood had cleared. We were sent home with a follow up MRI scheduled 6 weeks later to hopefully get a clearer image of what was underneath.

Only four weeks later Damien became unwell again which prompted his second admission to hospital. He underwent surgery for a biopsy and just a few days later we learnt about his heartbreaking diagnosis. DMG/DIPG is a rare paediatric cancer (incredibly rare in adults) with a poor prognosis. There are currently clinical trials running in multiple countries around the world with researchers working tirelessly to fight back against this disease.

Damien will start radiation in the coming weeks and is eligible for a clinical trial that provides him with a new drug designed specifically for his type of tumour. However- there’s a downside to this. Damien may end up with the placebo and ultimately, this could cost him his life.

There is the option for us to access this drug for him from Germany, however this comes at a cost of approximately $1500-$2000 a week, alongside his other medical costs. We are trying to raise the funds to give Damien the best chance possible of fighting this disease.

If you know Dame then I don’t even have to explain how special he is. He is a wonderful partner, a devoted family member and a dear friend. It’s no doubt he’s left an imprint on your heart. Watching him go through this is the hardest thing we have ever faced and we are reaching out for help. Any donation, no matter how small will go towards assisting with Damien’s medical costs & any funds raised outside of this will go directly towards research, in hopes to find a cure for any future child or adult diagnosed with this disease.

We are so grateful for your support. We are in this together ❤️