Tag Archives: featured

Happy Birthday Edie!


What a night we had yesterday celebrating Edie’s 4th Birthday.

Thank you to everyone who attended, I’m sure you will all agree that the night just wouldn’t have been as successful as it was without the help from some of the best suppliers and entertainers!

We can’t say enough how appreciated they all are, here’s just a little thank you to everyone involved:

Levara Properties , A2z Accountants & DSA Media – our sponsors for the evening, who supported us throughout this whole event.

Maddison j creations – what a wow factor you provided us with by completely transforming the marquee into the most beautiful setting perfect for Edie’s birthday ball. Everyone commented on how stunning it all looked.

GoEvents – ran the evening for us controlling all sound, media, fundraising, and stage management.

Can Do Cupcakes (Wirral) and Its Sew You for creating the most amazing cake we have ever seen! Louise and Clare also support us at all of our events providing us with Edie’s cupcakes

Ben and Laura at Probooths for the fab selfie mirror

Simon Peter Photography for capturing our night.

Colin at MediaStir for filming the night.

**Now onto our entertainment:

Claire Simmo there is no one else we could of had host our special evening! You where absolutely fantastic!

The amazing Ray Quinn – what a performance.

Marc Kenny as always you run and help organise theses nights, as well as perform for us.

The guys from Madison we loved your party set at the end with Marc Kenny, I don’t think we could have fitted any more on the dance floor

Tricia McTeague provided us with a set throughout our meal – the most unreal voice!

Dani at Winterworks Entertainment provided us with unreal silks performance, our red carpet lady and fire artist on arrival

The fantastic MD Productions and Girl Talk UK – we loved both performances!

Thankyou to Hillbark Hotel for having us at their stunning venue.

And a big thankyou to absolutely everyone who donated auction and raffle prizes, and our fantastic volunteers on the night who helped with all the fundraising!

Were so excited to see the professional photos and video we had done of the evening – but heres just a few photos of the evening for now!

Hero Diaries – 9 months on

Lenny, Edie and Niamh

DIPG is an aggressive paediatric brain tumour, with a median survival age of 9 months from diagnosis. Today marks Edie’s 9 months.

We wanted to use this opportunity to focus on the fight so far and what affect DIPG has on Edie and her family.

Please share our video with your friends to show this can happen to any one of our children and has a devastating outcome for families all over the world. From a seemingly healthy perfect child to becoming critical in such a short time, Edie has defied all odds and has overcome each hurdle put in front of her, long may she continue to do so!! 🙏🙏

Text EDIE03 £? to 70070

Spider-Ede Rocks!

Can you help?

We are spreading awareness of Edie’s fight and DIPG by painting rocks, writing on them and adding photos to the Facebook group #SpiderEdeRocks.

If you would like to join in here’s what you need to do:

  • Join the facebook group #SpiderEdeRocks;
  • Decorate a rock using acrylic paint, marker pens or anything else you find that works;
  • Write on the rock:
    • The Spider-Ede Appeal
      Post a photo
      Please hide again
  • Seal the rock with PVA glue or varnish;
  • Post a photo of your masterpiece to the facebook group #SpiderEdeRocks.

If you don’t use Facebook then just comment below to let us know if you’ve found a rock and whereabouts. We love to hear how far our rocks have travelled!

If you’d like some ideas of what to use for rock painting, here are some acrylic paint pens and a spray seal on Amazon which are easy to use and far less messy that standard paints with a brush!

The news that rocked our world

Edie with Dr Ranj

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.