The Spider-Ede Appeal

Raising funds and awareness of DIPG

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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
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The news that rocked our world

30th November 2017 – Steve and I had the most heartbreaking news we could ever imagine. After months of headaches my three year old daughter Edie was referred for an
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News

Celebration of Life Video

January 16, 2019 Leave a comment

Edie would often have her music playing in the hospital room with her. When she had to leave us the first song that played right

It’s the little things

January 8, 2019 Leave a comment

Update – December 23, 2018 at 04:06PM

December 31, 2018 Leave a comment

Niamh and Lenny with Santa

Update – December 12, 2018 at 12:25PM

December 17, 2018 Leave a comment

Fund Raising & Events

Happy Birthday Edie!

October 13, 2018 Leave a comment

WOW! What a night we had yesterday celebrating Edie’s 4th Birthday. Thank you to everyone who attended, I’m sure you will all agree that the

Postponed: Greg’s Sponsored Climb

August 8, 2018 Leave a comment

Weekly Roundup 3rd June

June 3, 2018 Leave a comment

The Hero's Ascent: Greg's Sponsored Climb to the Summit of Mt. Snowdon

Heroic Endeavours

May 24, 2018 One comment

Christmas Party Poster

Spider-Ede Children’s Christmas Party

November 13, 2018 Leave a comment

🎄Come and join the Christmas fun!⛄️ For just £7 per child there will be a grotto with a gift, disco, children’s buffet and so much

Christmas Craft Fair, 1st December

November 4, 2018 Leave a comment

Spider-Ede's Birthday Ball - 12 October 2018

Final Call for Spider-Ede’s Ball Tickets

October 1, 2018 Leave a comment

Spider-Ede’s Birthday Ball

July 6, 2018 One comment

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Celebration of Life Video
January 16, 2019
It’s the little things
January 8, 2019
Update – December 23, 2018 at 04:06PM
December 31, 2018
Update – December 12, 2018 at 12:25PM
December 17, 2018
Visiting Santa at the Craft Fair
December 1, 2018

Running for Edie
January 3, 2018
Buy a Spider-Ede Bracelet
December 22, 2017
New YouTube Channel
January 2, 2018
Race at your pace challenge
January 1, 2018
Positive News from Mexico
February 12, 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!

The Spider-Ede Appeal – DIPG Awareness

The Spider-Ede Appeal – DIPG Awareness

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You all remember our fantastic John Hammond, Wirral’s local “running man”. Today he set off again on one of his crazy fundraising challenges. He is running the length of the Uk from John O’Groats to Lands End!! 🗺 🇬🇧 Totalling 860 miles and he’s hoping to get it done in 17 days. Running around 40-60 miles a day! 🏃🏻‍♂️🏃🏻‍♂️🏃🏻‍♂️🏃🏻‍♂️ John is raising money for 5 great local charities listed below for you all to take a look at what they do. We’ll be keeping track of John’s progress and you can too on his twitter account @johnammo29 You can also show John your support by donating at www.justgiving.com/crowdfunding/helphammo Well done John on your first day, 37 miles in the bag! 👏💪 we wish you the best of luck and know our girl will be watching over you all the way ❤️🕷💙 Mind- www.wirralmind.org.uk Local specialised support for anyone experiencing a mental health problem. DIPG Awareness- The Spider-Ede Appeal spider-ede-appeal.org.uk and Lucy’s pineapple fund www.lucypineapple.co.uk Raising funds for awareness and research into DIPG. The Paul Lavelle Foundation- paullavellefoundation.co.uk Raising Awareness or Male domestic violence and supporting victims and families affected. Claire House Children’s Hospice- www.clairehouse.org.uk Helping seriously and terminally ill children. Supporting better quality of life Charlie’s Chance-www.charlieschancefoundation.org Offering emotional and financial support to local children and their families affected by cancer. #Hammo #RunningMan #CharityHero #JOGLE

Today we have taken time some quality time and managed a family day out at the zoo 🐘🦁🐍🐵🦒🐸 A group of our beautiful friends had put a collection together and in Edie’s name made a donation to Chester Zoo because of Edie’s love of animals. A memorial leaf has been placed on the giving tree near the lion enclosure and we were sent tickets to visit. We had a lovely day and our girl didn’t fail to let us know she was with us, little signs everywhere 😍 There were a few tears along the way as this was one of Edie’s favourite places but what a thoughtful gift that we will cherish forever. ❤️🕷💙 #EdiesLegacy #DIPG #DIPGAwareness #EndDIPG #RememberMe #ChesterZoo #AnimalLover To donate directly into Edie’s DIPG research fund: Visit JustGiving.spider-ede.org.uk

🚢☀️🥂ALL ABOARD!!🍻☀️🚢 Sunday 2nd June we have our popular Spider-Ede cruise setting sail! Come along for live music, full bar and incredible atmosphere onboard the Mersey Ferry!! 🕺🏻💃🏻🥂🍻🏝🚤☀️ We are raising money that will go directly into Edie’s research fund within The Bradley Lowery Foundation 🙌🙏 Join us to have a great time and help our future children in the fight against DIPG 💪 Tickets are just £20pp and can be ordered by inboxing us here on the page or emailing Steve Smith on stevestandrew@hotmail.com As always we look forward to seeing you all there and hope we can raise some much needed funds 🤞🤞 #EdiesLegacy #DIPG #DIPGAwareness #EndDIPG #Wirral #Mersey #FerryAcrossTheMersey #Liverpool #MerseyFerries

Today it has been 6 months, half a year since we watched helplessly as our beautiful daughter took her last breath lay in our arms💔 When you have a child you don’t ever expect them to be taken from you, especially not so soon. She was a darling, a sweetheart, the entertainer and the carer. We miss her so much and everyday is painful as we expect it always will be😢 What we can’t understand is how this can keep happening and go unnoticed by the majority? Still so many people unaware that this happens 😔 Since Edie left us we have read stories of 5 more children newly diagnosed in the Uk alone. There will be so many more than 5 diagnosed in the last 6 months but unless we see it in media articles we don’t find out. This is down to the families personally going to the newspapers and sharing their stories. We still hope people talk about Edie but also talk about DIPG. This can’t keep happening to innocent children. #EdiesLegacy #DIPG #DIPGAwareness #EndDIPG Help raise funds to go directly into DIPG research: Visit JustGiving.spider-ede.org.uk

Who remembers our 2 ferry trips across the Mersey? ⛴ Both nights were a hit! Everyone enjoyed themselves and were asking “when’s the next?” 🤔 🔆Well, here it is!🔅 A night on the ferry with a brilliant Live band! 💃🏽🕺🏽 Contact Steve Smith for tickets, make sure you get them fast! 🎟 ❤🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Raising funds for DIPG research #EdiesLegacy #DIPGAwareness

Today is Uncle Joe’s birthday. Edie has so much love for him, this video was taken in Mexico last year as she wanted to send it to him. Yet another beautiful memory we will all treasure and we had to share it with you. 😍😍 Beautiful Edie, singing so sweetly. “my dear” was her own addition. So much love for our girl ❤️🕷💙

Edie would often have her music playing in the hospital room with her. When she had to leave us the first song that played right after was “Tell everybody I’m on my way” from the movie Brother Bear 🐻❤️ Listen to the song, this was Edie’s way of telling us all in the room with her that she’s ok, going somewhere new and it’s ok ❤️🙏🙌 Colin from MediaStir who videoed Edie’s birthday ball in October also came to Edie’s celebration of life. He captured both events perfectly and we can’t thank him enough for these wonderful memories. And what a perfect choice of music to put with the video....click on the YouTube link below to see the video 📹📸 Thank you everyone who came and gave Edie the best send off that she truly deserved. We know she would of been watching and loving every part of it ❤️🕷💙 https://youtu.be/kqQpE1TNEBM

Sometimes it’s the small things ❤️ Sorting through the piles of envelopes & leaflets that we have just left at the side when they’ve been posted and come across this. Almost missed the little message. We don’t know this person, had no idea he knew us. If anyone knows Jack that delivers for amazon in the Wirral area please thank him and let him know this made us smile. Jack might not have said this to us if we had been in and opened the door. We often see people looking at us not knowing what to say or if they should say anything at all. Please don’t ever be afraid to speak about Edie, tell us you are thinking of her or of us. She is not a stigma, she still is and always will be our daughter ❤️💙 to know that people are thinking of her means so much. If you can be anything, be kind. You might just change someone’s day completely. Thank you Jack, you didn’t have to write this but it was very thoughtful, especially from a complete stranger ❤️🙏 #DIPGAwareness #BeKind #Love #Kindness #ChildhoodCancer #CancerSucks #DIPG

Exactly a year ago today. Driven by love and desperation. Our little family of 5 flew 5000 miles away from home in search of hope. We didn’t know then that we would be flying home after losing Edie to this Monster 💔💔 We had to hope that something could save our baby. Never wanting to just accept what Doctors had told us, prepared to fight and do anything we could to give her a chance. 💪 DIPG is a high grade brain tumour that develops mostly in children aged 3-10 and has the shattering prognosis of up to 9months. 9 months to make memories, with a beautiful child you brought in to the world, have been watching grow up, and never imagined that would be cut short at 4 years old 😢 Edie was normal, happy, seemingly healthy 2 year old until summer 2017 when she started getting headaches and became increasingly emotional. She was diagnosed with DIPG 30th November 2017 after a precautionary MRI scan. We had 11 months with Edie from diagnosis, but it was a rollercoaster. Her fight and bravery made us so proud and she raised so much awareness, touching so many hearts❤️ We have been struggling during the festive season, our first without our girl. Please give us a little more time and we’ll be right to it again. Thank you for all of your well wishes, love and constantly having us in your thoughts. We need it and appreciate it🙏🙌 We wish you all a healthy and peaceful 2019

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