Author Archives: Spider-Ede

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 didnโ€™t get the results we hoped and prayed so hard for from the EEG.

It showed very little brain activity ๐Ÿ’”๐Ÿ’”๐Ÿ’”

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 hasnโ€™t dropped since ๐Ÿ™๐Ÿ™๐Ÿ™๐Ÿ™

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 โค๏ธโค๏ธ

๐Ÿคž๐Ÿคž๐Ÿ™๐Ÿ™Come on Ede ๐Ÿ™๐Ÿ™๐Ÿคž๐Ÿคž


Text EDIE03 ยฃ? 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. ๐Ÿ™๐Ÿคž 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:
โ€œThoughts become things! Everyone please think/pray/meditate and focus on Edieโ€™s recovery! Positive vibes all round!โ€
And so we ask only this of you tonight ๐Ÿ™๐Ÿ™๐Ÿคž๐Ÿคž
via Instagram

Update – October 17, 2018 at 08:56PM

A picture speaks a thousand words.

I have debated putting this photo up. Not because of how I look, that is so far from my concerns.
But for fear people will shy away from seeing the real pain.

Yesterday Edie was doing AMAZING, almost off ventilation and taking so many breaths for herself.
All of a sudden in the afternoon she started to breathe irregularly, we alerted the medics. The ventilator was turned up and she was given a check over. She had become limp and unresponsive.
The Doctors took her for a CT scan, the initial thought was that there may be a bleed on the brain. I never thought Iโ€™d say โ€œunfortunately there is no bleed on the brainโ€

The only visible culprit is the Tumour
Has it taken another function from our baby??
We just have to wait, there has still been no improvement. We pray for a miracle ๐Ÿ™๐Ÿ™๐Ÿ™ So why did I take this photo? We need you to see the reality of this, the raw hurt it causes. On the exterior we know we look strong. But when nobody is looking, sometimes not even our family, this is the time our worries creep in and we crumble.
All of the questions what? why? If?

Looking back at the photo is so strange with the โ€œhappyโ€ birthday decorations in the background. Just another reminder of how quickly things can change.

Please send Edie all of your prayers and positivity. Only she can step up her game right now and push back. She has done it before! ๐Ÿ™๐Ÿ™๐Ÿคž๐Ÿคž
We believe in her and we believe in God ๐Ÿ™
Text EDIE03 ยฃ? to 70070

Update – October 13, 2018 at 07:55PM

Today we will be filling the day with Edieโ€™s favourites:
Story books, “Dirty Bertie” ๐Ÿ™ˆ and “Weโ€™re going on a Bear Hunt”, favourite movies, “Beethoven” and “Home Alone”.

The wonderful nurse in with Edie today hand made a birthday sign for the wall!

Friends have visited and we will see more through the day!๐ŸŽ‰๐ŸŽ๐ŸŽˆ This is an extra special day! Our warrior is 4! And like most birthdays when she asks “am I like Niamh now?” we have already explained to her “it was Niamhโ€™s birthday last month so she is 5” ๐Ÿ˜๐Ÿ˜ forever chasing her sister!! Thank you all for your wonderful love-filled messages, we have showered her with love and will do all day. Last nights birthday ball was amazing, we looked through photos and watched videos, playing them to Edie. ๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰

A day of positivity, complete positivity!

Happy Birthday Baby Girl! ๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰
Text EDIE03 ยฃ? to 70070

Happy Birthday Edie!


What a night we had yesterday celebrating Edie’s 4th Birthday.

Thank you to everyone who attended, Iโ€™m sure you will all agree that the night just wouldnโ€™t have been as successful as it was without the help from some of the best suppliers and entertainers!

We canโ€™t say enough how appreciated they all are, hereโ€™s just a little thank you to everyone involved:

Levara Properties , A2z Accountants & DSA Media – our sponsors for the evening, who supported us throughout this whole event.

Maddison j creations – what a wow factor you provided us with by completely transforming the marquee into the most beautiful setting perfect for Edieโ€™s birthday ball. Everyone commented on how stunning it all looked.

GoEvents – ran the evening for us controlling all sound, media, fundraising, and stage management.

Can Do Cupcakes (Wirral) and Its Sew You for creating the most amazing cake we have ever seen! Louise and Clare also support us at all of our events providing us with Edieโ€™s cupcakes

Ben and Laura at Probooths for the fab selfie mirror

Simon Peter Photography for capturing our night.

Colin at MediaStir for filming the night.

**Now onto our entertainment:

Claire Simmo there is no one else we could of had host our special evening! You where absolutely fantastic!

The amazing Ray Quinn – what a performance.

Marc Kenny as always you run and help organise theses nights, as well as perform for us.

The guys from Madison we loved your party set at the end with Marc Kenny, I donโ€™t think we could have fitted any more on the dance floor

Tricia McTeague provided us with a set throughout our meal – the most unreal voice!

Dani at Winterworks Entertainment provided us with unreal silks performance, our red carpet lady and fire artist on arrival

The fantastic MD Productions and Girl Talk UK – we loved both performances!

Thankyou to Hillbark Hotel for having us at their stunning venue.

And a big thankyou to absolutely everyone who donated auction and raffle prizes, and our fantastic volunteers on the night who helped with all the fundraising!

Were so excited to see the professional photos and video we had done of the evening – but heres just a few photos of the evening for now!

Final Call for Spider-Ede’s Ball Tickets

Spider-Ede's Birthday Ball - 12 October 2018

If you haven’t purchased your ticket yet for Spider-Ede’s Birthday Ball, then you only have 24 hours left to do so! We need to give final numbers to Hillbark Hotel so if you’re planning to attend then please purchase your tickets online today to avoid disappointment.

Spider-Ede’s Birthday Ball
Friday 12th October 2018 – 6pm until Late
The Hillbark Hotel, Wirral

Featuring live entertainment from Ray Quinn, Tricia McTeague and Luma, hosted by Claire Simmo.

Purchase tickets via PayPal

Spider-Ede's Birthday Ball - 12 October 2018

Spider-Ede’s Birthday Ball is sponsored by
A2Z Accountants
Levara Properties
DSA Media

Update – September 23, 2018

โค๏ธQuick update here everyone before we try and get some sleep๐Ÿ’™

Surgery was successful, both shunts are now functioning again ๐Ÿ™Œ sheโ€™s stable, breathing well and all her vitals look good ๐Ÿ™Œ

Blood samples taken after yesterdayโ€™s surgery showed that Edie had low haemoglobin levels. So she needed a blood transfusion to give her some help ๐Ÿ’ช

This small act of donating blood that somebody, somewhere took the time to do has just helped Edie fight for her life.

If you can, please consider donating blood at your local blood bank.
Donated blood saves so many lives everyday!

Thank you all, beautiful people for praying and sending your positive energy to our little warrior again! You never let us down ๐Ÿ™๐Ÿ™
Text EDIE03 ยฃ? to 70070

Edie Recovering - Spider-Ede Appeal. Save a life, donate blood

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