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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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The Spider-Ede Appeal – DIPG Awareness

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Day 17 of running 40-60 miles!! He’s on the final leg of his epic journey!🏃🏻‍♂️🏃🏻‍♂️ Super John Hammond is almost finished running the length of the UK! 🇬🇧 He’s already ran more than 800 miles over the consecutive days, which is unbelievable!! “Think everyone knows how much I’ve struggled through this and I have absolutely no idea how I’ve nearly got through it. I don’t even think it’s down to having a strong mind this time. I think it’s down to sheer madness” John, this morning as he started his last 50+ miles. John has almost reached his fundraising target for his 5 charities, we ask you all to please dig deep just as he has to complete this challenge and give him a massive boost by donating as much as you can to help him reach his target! 🙏🙏🙏 Well done John, last push and you are there! You truly are a hero! 🙌 www.justgiving.com/crowdfunding/helphammo Here are some photos of John with our family, the support he has always shown us is unwavering and we are so proud of him as we know Edie would be. 💙🕷❤️

"If a drug company came up with a drug for DIPG, it would take them 10 years, and cost them 100 million bucks, and they would treat 15-to-20 kids a year - so there is no return on investment for them," Dr Dun said. This quote is taken from an article published in the Newcastle Herald online, Australia. Our question as parents, families, communities is are our children not worth the investment??? #EdiesLegacy #DIPG #DIPGAwareness #EndDIPG #ResearchMatters To donate directly into Edie’s DIPG research fund: Visit JustGiving.spider-ede.org.uk

🏅Keep going John🏅 Super John Hammond is running the length of the Uk to raise money for 5 local charities! John o’groats to Land’s end, 874 miles! 🏃🏻‍♂️🏃🏻‍♂️ He’s over half way and doing amazing! Running around 40-60 miles a day 😱 Today we got up early to chase him down and cheer him on before school! We are incredibly proud of you John and feel so lucky to call you a friend! 🙌👏 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 commenting some words of encouragement or donating at www.justgiving.com/crowdfunding/helphammoeverystep

🌟Raffle time🌟 As you all know, we are continuing to raise funds to help with DIPG research, in the hope that one day a cure is found and families no longer have to go through the heartbreak of what we have❤️ This means events will occasionally take place and we have one this Sunday! Our past boat trips have been a hit, the weather is hot and dry in the evening, what better way to spend it than sailing up and down the Mersey with a live band and a drink in hand. ⛴🎤🍻 We are raffling off 2 pairs of tickets for just £1 per entry - 2 chances to win! 🎟 🎟 If you would like to enter, please comment below and we will message you with payment details. Raffle will be drawn on Saturday evening! ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk #EdiesLegacy #DIPGAwareness

The last 7 months have been awful. After we lost Edie we had many well wishes, cards, letters, gifts, notes. At the time we couldn’t read them 💔 Today we pulled the rainbow bag out that Iwe had “shoved them all in”. We’ve only managed to read 3 properly but feeling so overwhelmed with love. We know that over time we will read through them over and over. The shoes you see in the corner are Edie’s favourite old shoes, hand-me-downs that she loved to wear on the wrong feet 🙈 they ended up in the bag as we sorted through some things and decided we wanted to keep them and somehow get them box framed 😍 We didn’t acknowledge anyone that sent us these things and we know you didn’t expect any recognition but we do want to say THANK YOU. It is a massive comfort knowing the love our girl has. ❤️🕷💙 #EdiesLegacy #DIPG #DIPGAwareness #EndDIPG #ThisIsGrief To donate directly into Edie’s DIPG research fund: Visit JustGiving.spider-ede.org.uk

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

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