Tag Archives: awareness

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

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

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

Weekly Roundup 3rd June

Hi all, it’s our weekly round-up post! As always, we want to say a huge thank you to everyone who is mentioned below, for those who have attended/supported and for everyone who has made a donation no matter what size. We appreciate you all ❤️💙
 
Check out our upcoming events to see what’s going on in the next week and beyond.
 
Last Sunday, young Liam Reay did a sponsored walk over 12 miles. He raised just over £584! Well done Liam!
 
Yesterday we had a Vale Park Music Festival up in Wallasey. Great music, lots of fun, and despite the poor weather it raised £438. A big thank you to Claire Sim and all who volunteered, plus Christopher Locke for organising the music and Ragamuffin and guests for performing.
 
Also, Steve Allen ran the Abersoch 10k with his family whilst his wife Helen Allen, and her sister Nikki were cheerleading and helping us spread awareness with Spider-Ede t-shirts on. Steve and Helen’s son, Will, sadly passed away from DIPG in December 2016 aged 14, and have since been fundraising in his memory to help other children #willpower
 
Today, Genting Casino held their poker tournament in aid of our appeal. Thank you to all involved and to those who attended.
 
Young Isabelle, just 6 years old, did a sponsored crab catch today as well, raising over £250! Well done Isabelle, such a wonderful way to raise awareness and sponsorship!
 
Also today, Jazmin Sneddon walked up Mount Snowdon in a Spider-Man costume in the hot sunshine! Well done Jazmin for not just raising funds but also spreading more awareness for us to those who you met along the way.
 
This past week, Katharine Hughes walked 96 miles on the West Highland Way in Scotland, flying the Spider-Ede flag and collecting donations along the way. A huge thank you to Katharine for raising awareness so far away and also of course for the collections made. She’s raised just over £705 so far! You can show your support for her at https://www.justgiving.com/fundraising/katharinehughes-westhighlandway4edie-may
 
Also thanks this week to
Thingwall Primary School’s bake sale before half term – £180
St Andrews C/E School – £243
St Joseph’s Upton School – £642
K G Lancaster – £475
Mr J Evans – £100
Combermere No 605 Benevolent Fund – £250
Mr Kevin P Conlan – £1,000
Accounting and Commercial Solutions Ltd – £100
Eli Lilly Speke Operations Workplace Trust – £500
Euro Garage Green Lane – £31.30
Co-op Teehey Lane – £38.81
Iconic Upton – £31.05
Jaime & Yvonne Slawson Collection – £103
The Mockbeggar Hall Wetherspoon Moreton
The Coffee Co, Bebington
 
Next week we have Bingo night featuring Captain America, who has been practising the Floss! 😉 Tickets are still available, £10 per person, drop us a message if you want to buy any.
 
Also today, Rachael Rowlands, David Hibbert and Lucy Rowlands are driving from Edinburgh to Rome, roughly 2000 miles each way, in an old London Taxi as part of a Rust2Rome rally with 40 other cars. The criteria was that the car could not be worth more than £500 on the road! Spare a though for them driving this non air conditioned car considering the weather forecast this week! and please show your support by sponsoring them at https://www.justgiving.com/fundraising/rachael-rowlands2
 
Good luck to Sue Fowler and Harry Walch who are swimming in the Great North Swim, and Scott McCready who is doing an Ironman competition, all in aid of Edie next weekend.
 
Finally, a couple of future ticketed events if you want to get in before they all go!
23rd June, Love 80s, St Joseph’s Social Club Birkenhead – https://www.eventbrite.co.uk/e/love-80s-roadshow-tickets-45551396453?aff=es2
1st July, Spider-Ede Sunset Cruise, Seacombe Terminal – http://cruise.spider-ede.org.uk
 
Apologies if we’ve missed anyone out. Please let us know in the comments below. If you are holding a fundraiser or wish to, please email fundraising@spider-ede.org.uk so that we can send you our ePack and get you on our events calendar.
 
Or text EDIE03 £(amount up to 10) to 70070

 

Hero Diaries – 6 Months On

On 30th November 2017 we heard the words no parent should have to hear…

On the 30th November 2017 we heard the words no parents should have to hear…

This week we are 6 months on from that awful day and we wanted to share with you our journey from the beginning. For those that have been with us from the start and those that have joined us along the way, we are so thankful to have you fighting with us.

JustGiving.spider-ede.org.uk
Text EDIE03 £? to 70070

Spider-Ede Around the World

All Around the World

Are you going on holiday? Or even a day out somewhere different?? 🗺

Can you help us by wearing your Spider-Ede Tshirts? Spread the word and tell the world! ✈️🌍 🚗🌍 🚂🌍 🚢

If you haven’t yet got yourself a tshirt you can order one from the wonderful Nikki at 14 Degrees Down.

How far can Spider-Ede get?

You can post your photos on Facebook, Twitter or Instagram, make them PUBLIC and use #SpiderEdeTee so that we can see them, and let us know where in the world you are 💪💪

Alternatively you can send your photo direct to: contact@spider-ede.org.uk

All Around the World

« Older Entries