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
Sunday 13th October 2019, the day we should be waking up with a big 5
year old Edie, excited to rip open her presents. Now it is a day we
will spend thinking of what could of been. The first of Edie’s birthdays we won’t be celebrating with her cheeky smiley face.
22nd October, the day we will never ever forget for all the wrong reasons. It will be 1 year since we said goodbye to our beautiful angel, 1 year since Edie took her last breath in our arms.
To honour Edie, on both days we would like to light a candle and would be happy for anyone to join us in lighting one too and posting a photo with the hashtag #ACandleForEdie so we can show Niamh, Len and Edward all the lovely posts. If you would usually send Edie a birthday card, please still send a card, we know Niamh will want to read them out loud so her little sister can hear, any donations to help support DIPG, would also be appreciated.
We are trying to do something lovely to remember her but in reality we just want this month to be over ❤️💙
Edie would often have her music playing in the hospital room with her. When she had to leave us the first song that played right after was “Tell everybody I’m on my way” from the movie Brother Bear 🐻❤️ Listen to the song, this was Edie’s way of telling us all in the room with her that she’s ok, going somewhere new and it’s ok ❤️🙏🙌
Colin from MediaStir who videoed Edie’s birthday ball in October also came to Edie’s celebration of life. He captured both events perfectly and we can’t thank him enough for these wonderful memories. And what a perfect choice of music to put with the video. 📹📸
Thank you everyone who came and gave Edie the best send off that she truly deserved. We know she would of been watching and loving every part of it ❤️🕷💙
Sometimes it’s the small things ❤️ Sorting through the piles of envelopes & leaflets that we have just left at the side when they’ve been posted and come across this. Almost missed the little message.
We don’t know this person, had no idea he knew us. If anyone knows Jack that delivers for amazon in the Wirral area please thank him and let him know this made us smile.
Jack might not have said this to us if we had been in and opened the door. We often see people looking at us not knowing what to say or if they should say anything at all.
Please don’t ever be afraid to speak about Edie, tell us you are thinking of her or of us. She is not a stigma, she still is and always will be our daughter ❤️💙 to know that people are thinking of her means so much.
If you can be anything, be kind. You might just change someone’s day completely.
Thank you Jack, you didn’t have to write this but it was very thoughtful, especially from a complete stranger ❤️🙏 #DIPGAwareness #BeKind #Love #Kindness #ChildhoodCancer #CancerSucks #DIPG
What do you give a child that isn’t physically here anymore? 💔🎄🎁
Edie has a bench and a tree in our local cemetery for us to visit her. We have painted a #SpiderEdeRocks with her favourite movie characters and on Christmas day we’ll put it near her tree. We hope when people see it they remember or learn a little bit about our girl, who she was, what she likes ❤️💙
Our SpiderEdeRocks are to raise awareness of DIPG and of Edie’s personal fight, they will forever be her legacy. If you want to help us out search for the Facebook group #SpiderEdeRocks and get involved.
Yesterday evening the real Santa from Story Time with Santa made a special visit to our home 🎅🏻❤️ As parents Christmas is proving difficult for us after losing Edie, she absolutely loved this time of year and we know she’d love us to still have a magical time. Especially her brother and sister.
We had every intention on trying to take the children to see Santa but knew that it was going to be emotional. Then, one of our superhero friends Yvonne swooped in to save the day again! She arranged for Santa to come to us to take away a bit of pressure and help us avoid any crowds.
Well, Santa was truly incredible! Niamh hasn’t stopped talking about it, he read a lovely story and although Iron Len ran riot he managed to get him to join in too!
Next year I really hope we feel less pain because we would love to be able to visit Santa at one of his wonderful shows! Thank you Santa! 🙏🎅🏻
Yesterday marked 1 whole month since you had to leave us here💔 It’s not getting any easier, if anything it’s harder.
DIPG stole our daughter.
From the moment we were told she had a brain tumour in her pons, the centre of her brain we knew we were up against it, the options are so few, none of them being curative.
We are going to struggle through Christmas, a time that Edie loves and was always so excited about. But once that’s out of the way we will be focusing on DIPG, as a family we want to help get more research, more treatment for all of our children so one day families won’t be faced with Doctors telling them so bluntly “she WILL die”. It’s painful to stay close to DIPG but if we don’t, who will?
We would be so grateful if you all hang tight with us through the painful holiday season and then help us push forward in the new year 🙏🤞
If you would like to donate towards Edie’s DIPG fund we will be staying with The Bradley Lowery Foundation and they are designating what’s left of Edie’s treatment fund for DIPG research.
Text EDIE03 £? to 70070
The amount of supporters that would like to celebrate Edie’s life with us really is so lovely, we are overwhelmed ❤️👼🏽❤️
Due to the interest, we have had to make this a ticketed event to be sure our nearest and dearest have the chance to be there and unfortunately, there is no longer any availability.🎟🎟
Please, if you do have a ticket and can no longer make it or you have a day and night ticket but can only attend the evening or day, do let us know so those who would like to be there at that time can join us.🤞🏽 To be on the cancellation list, or to cancel / change your tickets, please contact us.
To continue with Edie’s legacy we will be raising funds with The Bradley Lowery Foundation for the research of DIPG and also offering support to North West families that go through the heartbreak and devastation that we have.
We are holding a Christmas Craft Fair on Saturday 1st December from 11am, at St Joseph’s social club, Greenbank Road, Birkenhead.
With a variety of craft stalls selling handmade goods, Santa’s grotto and a carwash service (weather dependent) will be available too.