What we’re fighting for

I spent a little while looking over this photo and deciding if I should post it or not. I’ve decided I should. Whilst it’s not distressing to look at for an outsider, this is the epitome of heartbreak for us. Spending a day in the hospital, whilst they sedate your baby to see if her tumour has grown. This is the reality of DIPG, it’s known for its aggression it’s known for its mercilessness. How could this happen to someone so small, innocent and fragile? How is that fair? It‘s not, it’s not fair to us, and it’s certainly not fair to Edie May. 😭

Please, please keep sharing our cause, please keep flooding your news feeds with her face, please keep telling anybody who will listen, and shout it to those who won’t. This is a life, a life that could be saved with the help of other people. In fact, it’s not just one life, it’s many. By helping save Edie, you’re saving our whole family, not just Ashleigh and Steve, not just Niamh and Lenny, but all of the Grandparents, Aunties, Uncles, Cousins and even friends that she means the world to. Please keep our mission going, help us with every fibre of your beings. You’ll be saving lives. Thank you

The news that rocked our world

30th November 2017 – Steve and I had the most heartbreaking news we could ever imagine. After months of headaches my three year old daughter Edie was referred for an MRI with suspect migraines. The result of these scans came back that Edie has a 3.4cm tumour in her brain stem. We then went straight to Alder Hey hospital in Liverpool, where she had a more advanced MRI scan on the Friday. She still has to go through more tests but the specialists believe it could be a Diffuse Intrinsic Pontine Glioma (DIPG). This is a rare cancer that effects children and so far is untreatable, incurable and fatal.

5th December 2017 – We returned to Alder Hey and Edie got to meet Dr Ranj filming for CBeebies. We spoke to a number of specialists and were left with a lot to think over. After meeting Lucy from Lucy’s Pineapple Fund, we also contacted the Instituto de Oncologia Intervencionista in Monterrey, Mexico, a group of doctors specialising in DIPG treatment who asked for a copy of Edie’s brain scans and a video of her in person.