What we’re fighting for

Edie getting ready for her MRI scan

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

Edie getting ready for her MRI scan

Christmas Craft Fair, 1st December

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.

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

Update – 21st October

Not so long, but overdue…..

Sorry everyone. We have had a really crazy week. But we know how worried you have all been.

Unfortunately, we didn’t get the results we hoped and prayed so hard for from the EEG.

It showed very little brain activity 💔💔💔

This hit us hard, and not even a week after we had been organising her birthday ball we began to make funeral arrangements for our 4 year old daughter.

Then she gave us hope. Her oxygen saturation had dropped and Doctors explained it will probably continue to drop and not come back up, they told us her heart would then slow and her body begin to shut down completely.

Well, her oxygen saturation came back up that night and hasn’t dropped since 🙏🙏🙏🙏

We will continue to wait and let Edie take us the direction she needs to go. She is simply on ventilation, medication for pain and inflammation and natural supplements.

Better news is that today Auntie Kirsty arrived in Monterrey with WonderNiamh and IronLen. They have certainly raised spirits all round and today our hearts are a little fuller again ❤️❤️

🤞🤞🙏🙏Come on Ede 🙏🙏🤞🤞

❤️🕷💙

JustGiving.spider-ede.org.uk

Text EDIE03 £? to 70070

Update – October 18, 2018 at 10:11PM

Ok everyone, we need your help.
Edie will go for an EEG in the next hours.
Due to the sudden lack of physical response the Doctors will carry out a thorough test of neural activity. 🙏🤞 We need you to please put your all into Edie, ask whichever greater force you can. Ask that Edie shows us what to do next.
We are really lost right now in between complete hope for her to recover and that we want to be at peace with our decisions.

This is from one of our incredible supporters, a comment that yesterday stood out to me:
⬇️⬇️⬇️
“Thoughts become things! Everyone please think/pray/meditate and focus on Edie’s recovery! Positive vibes all round!”
⬆️⬆️⬆️
And so we ask only this of you tonight 🙏🙏🤞🤞
via Instagram

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