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Liverpool Echo Article

Posted on December 12, 2017 by Spider-Ede Leave a comment

Edie Drinking Tea

Most parents are planning their children’s perfect Christmas… we’re thinking of funeral songs

Read the article on the Liverpool Echo

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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. 🙏🤞 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: ⬇️⬇️⬇️ “Thoughts become things! Everyone please think/pray/meditate and focus on Edie’s recovery! Positive vibes all round!” ⬆️⬆️⬆️ And so we ask only this of you tonight 🙏🙏🤞🤞

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 I’d say “unfortunately there is no bleed on the brain” 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 🙏🙏🙏 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 “happy” 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! 🙏🙏🤞🤞 We believe in her and we believe in God 🙏 ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

💃🏽The Spider-Ede Birthday Ball🕺🏽 Another huge thank you to everyone that attended the evening and made Edie’s 4th Birthday so special 🎈 Not only did we all really enjoy the evening, after all the costs and outgoings we have counted up the total of what was raised towards Edie's treatment. 🌟🌟🌟An amazing £8153!!!🌟🌟🌟 We again thank all of our suppliers and event organisers who made the ball so special❤️ Here are some photos from the evening .. look out for the full album later today. ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

Today we will be filling the day with Edie’s favourites Story books, “Dirty Bertie” 🙈 and “We’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!🎉🎁🎈 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 Niamh’s birthday last month so she is 5” 😍😍 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. 🎉🎉🎉🎉🎉🎉🎉 A day of positivity, complete positivity! Happy Birthday Baby Girl! 🎉🎉🎉🎉🎉🎉🎉 ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

❤️🕷SPIDER-EDE’S BIRTHDAY BALL 🕷💙 It’s tonight!! We are loving scrolling through all of our newsfeeds, seeing everyone’s preparations for the biggest celebration of the year!! 💅💄💁💃🏻🕺🏻 Edie will turn 4 tomorrow and tonight her home town celebrates in style! 🎉🎉🎉4️⃣🎉🎉🎉 We look forward to see all of your photographs and video footage of the evening!! 📷 🍾 🥂 ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

“It’s ok not to be ok” “Talk about your feelings” Anyone that knows Wonder-Niamh or has even met her just once, she is very shy. On our FaceTime today Niamh told us for Mental Health Awareness they had a worry monster in school and people put their worries inside. She said she didn’t put hers in when it came round but that later on she did tell her teacher. And so I asked her with a lump in my throat what her worry is. “I worry about Edie coming home from Mexico, will she get better and play with me again” I have no words for how I feel hearing our 5 year old baby has this huge worry 😢💔 💙🕷❤️ JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness #MentalHealthAwareness #TalkAboutIt #LoseTheStigma

What an unreal #spiderederock of our beautiful Edie done by @sophie._mua absolutely amazing ❤️💙

🌟LAST CHANCE🌟 The Spider-Ede Birthday Ball is set to be our biggest event yet! 🕺🏽🕺🏽 It is a night not to be missed and is happening in less than 2 weeks! 🎉 Today is the last chance to buy your tickets and join us to celebrate Edie’s 4️⃣th Birthday 🎂 Follow the link to be sure you don’t miss out 💃🏽💃🏽 edieball.spider-Ede.org.uk ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

⭐️Do you get paid a little later than others?! You can still be involved and support Edie with a payday pledge ⭐️ ⏰It’s time for Edie’s... £2️⃣ payday pledge! ⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇⬇ Edie needs your help, we’re asking you all for just £2⃣each payday ✅Yes, just £2! ✅Yes, we could ALL save her life! ✅Yes, £2 matters! ✅Yes, she needs you! ✅Spread the word, share this post! ✅Can you tag 3 friends you think would like to help? Text ‘Edie03’ followed by £(up to £10) to 70070 Or... https://www.justgiving.com/campaigns/charity/thebradleyloweryfoundation/spideredie Follow the link, go to ‘other amount’ and enter £2! Even £1️⃣ matters! #donate #charitytuesday #childhoodcancer #raiseawareness #bebold #payday #morethan4 #dipg #dipgwarrior #dipgawareness #fight4edie A little throwback photograph of our gorgeous girl ❤️💙

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