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Hero Diaries Week 8

Posted on March 5, 2018 by Spider-Ede Leave a comment

This week Edie has been in ICU all week.

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Christmas Party

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The Spider-Ede Appeal – DIPG Awareness

The Spider-Ede Appeal – DIPG Awareness

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Visiting Santa at the Craft Fair
December 1, 2018
One Month On
November 23, 2018
Edie’s Celebration of Life
November 19, 2018
Spider-Ede Children’s Christmas Party
November 13, 2018
Christmas Craft Fair, 1st December
November 4, 2018

Running for Edie
January 3, 2018
Buy a Spider-Ede Bracelet
December 22, 2017
New YouTube Channel
January 2, 2018
Positive News from Mexico
February 12, 2018
Ede-Fest, The Boot, Liscard
February 5, 2018

Lucia aguiñaga Rodríguez on Fly High Edie May
Lynn on Update – 21st October
Final Call for Spider-Ede’s Ball Tickets | The Spider-Ede Appeal on Spider-Ede’s Birthday Ball
Postponed: Greg’s Sponsored Climb | The Spider-Ede Appeal on Heroic Endeavours
BEZ on Spider-Ede Rocks!

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Upcoming Events

Children’s Christmas Party December 16, 2018 at 12:00 pm – 3:00 pm St Joseph's Centre, 2 Greenbank Road, Birkenhead, England, CH42 7JS, United Kingdom

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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! 🙏🎅🏻

Still a few tickets available ❤️💙

This 5 year old girl lost her little sister to DIPG not even 2 months ago. Being only 13 months apart in age they weren’t just sisters, they were best friends. Niamh is so brave and remembers her sister everyday. When her class had to paint decorations for their class tree, Niamh chose not to use the class colour of green but asked if she can do a red and blue one for Edie as well as her own one. So Edie’s angel decoration now sits at the top of the class tree, sparkly and beautiful just above Niamh’s all red one. ❤️💙 The staff, parents and children have been incredible at Church Drive. We have such a great support network, from sat crying in the car and parents I don’t know coming up and hugging me (thanks Julie, I did need it) To raising money to help us out over Christmas while we try and pick up the pieces. This community is part of the reason that I can say I think we’ll be ok. We miss Edie so much, DIPG took her from us far too early and we cry everyday. But if we look around there is also so much love that we can’t not smile even through the pain. Keep being kind to others, you never know what they are going through 💔

🎄Come and join the Christmas fun!⛄️ For just £7 per child there will be a Santa visit with a gift each, disco, children’s buffet and so much more! Don’t forget to dress to impress, you could win the Christmas outfit competition!! 🎉🎁 ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

Wow, as always.. thank you all for making yesterday so special! We couldn’t of done it without you all! But our main thank you’s go to the people that made the day it was! Marc Kenny and band.. who kept the celebration of life going until 1am!! Evolution parties.. who kept over 100 children entertained 🤩 WOW! Madison J Creations who made the room perfect 😍 Icy curls.. who were a massive hit! Mitch and Alex were non stop and are a new local business, well worth hiring at any event!! 😋 It’s sew you and can do cupcakes.. who’s cakes were all gone so so quickly 😬 they always impress with “Edie’s Cupcakes” Luna Dancefloors.. providing the amazing sparkling LED dancefloor. The Hair Spa.. who brought a little special sparkle to the event for everyone ✨ Keiko and friends.. who had the snakes slivering around everyone’s necks 🐍 Jubilee fireworks.. who gave us an amazing ‘low noise’ display including our own Edie May sign 🎆🎇 Probooths who had all the selfie lovers queuing for boomerangs! Winter works Entertainment.. who dropped every child’s jaw when they walked in to LED stilt walkers and performed an amazing fire breathing performance🔥 Simon photography and media stir for capturing every moment of the day.📹📷 John Clayton humanist who led us through those lovely speeches. Ultimate events for our EDIE lights to give the room that finishing touch!💎💫 Our very own Natalie for lending her sweet cart which was demolished 🍬🍭 And last but certainly not least, the staff at Thornton Hall Hotel. From the very beginning of planning the event, we knew it was going to be a big job. Jenny and her team were absolutely fabulous, everything ran so smoothly and nothing was too much bother, the venue was perfect and looked unreal ❤️ Please help us show our appreciation and give these business’ a follow! It wouldn’t of been as special as it was without them!

❤️Today is Edie’s Celebration of Life. ❤️ The day starts at 4pm at Thornton Hall Hotel, Torrintone Suite. To get to the Torrintone, come into the hotel car park and turn right. It is the very furthest part of the hotel you can get to and is tucked away. From the start it is Children’s entertainment up until 7pm, we have lots planned including the best fancy dress costume wins a prize 🤩 From 7pm is the evening entertainment and is a smart casual dress code. 👭 It is a 1am bar and if you would like to book a room in the hotel there is still availability! Please let us know if you can’t attend ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

It’s so good to see so many friendly faces at the craft fair. Wonder Niamh has even been to see Father Christmas. The children’s smiles are therapy ❤️🙌 Our community has really pulled together for our family and we can’t thank you enough.

We’ll see you at the Christmas Craft fair today! ❄️🎄⛄️ As you all know we are trying as a family to get into the Christmas spirit for the children. If you see us there give us a wave, a hug, a smile! ❤️ Come and have a look round, get some personal handmade Christmas gifts or treat yourself and support The Spider-Ede Appeal. Share and Tag friends you think would be interested in coming along! 🎁 🛍 Stalls include: Children’s books 📖 📚 Children’s craft table 🎨 👧👦🖼🖍 Christmas sweet treats 🍬 🍭 Christmas pet treat bags 🐶🐱 Edie’s bows and accessories🎀 Edie’s cupcakes 🍰🧁 🍪 Handmade candles, bath bombs and soap 🛀🕯🧼 Handmade jewellery 💎 💍 Handmade knitted gifts 🐻 🧸🧣🧶 Hand and foot print memories 🎨 👣 It’s Sew You 🛍💝 🧵 Tombola tables 🎁

After meeting with Thornton Hall Hotel, we are really pleased with the plans for the Celebration of Life so far and can see it is going to be the best send off for Edie. Please remember, the event is now Ticket only. You do need tickets to attend. There will be a fancy dress competition for the children with a prize for the best dressed. Adult dress code is smart casual. Children's entertainment begins at 4pm, anyone with a Day only ticket must leave no later than 7pm so Evening guests are able to come in. (This will be closely monitored) Anyone with a 'Day and Night ticket' planning to come later than 5pm, please let us know in advance to avoid your ticket being voided if you have not arrived in good time. If you have any problems or questions, please let Kirsty Stading or Kelly Tyrer know.

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