Tag Archives: video

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

Hero Diaries – 6 Months On

On 30th November 2017 we heard the words no parent should have to hear…

On the 30th November 2017 we heard the words no parents should have to hear…

This week we are 6 months on from that awful day and we wanted to share with you our journey from the beginning. For those that have been with us from the start and those that have joined us along the way, we are so thankful to have you fighting with us.

Text EDIE03 £? to 70070

New YouTube Channel

Today we set up the Spider-Ede YouTube channel to allow us to easily upload videos for everyone to keep track of our journey. We’re off to Mexico very soon and we expect to be there for 3-4 months, so whilst we’re away we’ll be doing some video diaries (vlogs) and adding them to the channel. So please subscribe to it to keep following our journey. We’ll also continue to have our team of fund raising avengers posting both here and on our various social media accounts (links in the top right of the site!).

We also hit our first 20% of our target over Christmas and New Year. Here’s what Edie thought of it!