Tag Archives: dipg

Celebration of Life Video

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 ❤️🕷💙

It’s the little things

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

Update – December 23, 2018 at 04:06PM

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.

#RememberMe #Cancer #DIPG #DIPGAwareness #CancerSucks #PediatricCancer #ChildhoodCancer #HomeAlone #Ratatouille #SpiderMan #Beethoven

Update – December 12, 2018 at 12:25PM

Niamh and Lenny with Santa

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! 🙏🎅🏻 Niamh and Lenny with Santa

One Month On

Baby bunny Edie, a memory from 4 years ago 🐰😍

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
#Fight4Edie #DIPGAwareness

Edie’s Celebration of Life

😵Wow!!! 😵

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.


Text EDIE03 £? to 70070

How is Niamh?

She’s a very strong and brave girl. We owe a lot to her, along with Len she gets us through each day.

Bringing smiles to us in the darkest hours ❤️

We truly wouldn’t know what to do, what to live for without them.

She understands so much, knows when to cheer us up and give us a hug 🙏❤️

But, there are moments that she herself needs these hugs, needs her questions answered.

We find her sitting quietly, ask her if she’s ok.

And she asks

“Where is Edie?”

“Why did she have to go to heaven last week?”

“Where is heaven?”

“Is heaven nice?”

“I miss her playing with me”

These are questions a child shouldn’t have to ask about their sibling, that parents shouldn’t have to try and find the right answer, and struggle to answer without completely breaking down 💔💔

But, she’s ok. We are all in the process, we don’t leave her out, this is her life too.

Just minutes after Edie left us I went out to speak with Niamh. I explained how we wouldn’t see Edie again.

“But Mummy, ‘course we will”


“Well we all have to die and go to heaven”

These are wise words from a 5 year old❤️

#DIPGAwareness #EndDIPG #DontForget

Update – October 29, 2018 at 07:31PM

This time one week ago we were watching our baby take her last breaths.
Waiting for her to leave us behind.
One week of so much pain.
We just want to hold you again, feel you, smell you, listen to your infectious laugh.

We miss you so much Ede, it hurts 💔💔💔 You were an angel put on this Earth, our perfect angel 😢

Update – October 23, 2018 at 02:35PM

We would like to thank everyone from the bottom of our hearts for the support since the news yesterday💔 Edie really did make her mark and leaves a legacy.

We will be having a memorial in Monterrey, Mexico today and will be planning Edie’s celebration of life for when we are home.

If you would like to carry out a candlelight memorial in Edie May’s honour we ask for it to be around the time we will be having her service, please light a candle at 7pm UK time ❤️💙

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