Tag Archives: dipg

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.

❤️🕷💙
JustGiving.spider-ede.org.uk
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.

❤️🕷💙

JustGiving.spider-ede.org.uk
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”

“How?”

“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 ❤️💙

Fly High Edie May

**upsetting images of reality**

It is with indescribable pain that we have to tell you all our baby gained her angel wings at 1.30pm yesterday afternoon

💔💔💔💔

I literally have no words to say anything more right now. Please keep us in your hearts. We are heartbroken and lost but so proud of how hard Edie fought and how many peoples lives she touched. An inspiration to us all.

Edie, you are forever our baby ❤️🕷💙

13/10/14-22/10/18

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