Tag Archives: dipg

Update – October 18, 2018 at 10:11PM

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 🙏🙏🤞🤞
via Instagram

Update – October 17, 2018 at 08:56PM

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 🙏
Text EDIE03 £? to 70070

Update – October 13, 2018 at 07:55PM

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! 🎉🎉🎉🎉🎉🎉🎉
Text EDIE03 £? to 70070

Update – September 23, 2018

❤️Quick update here everyone before we try and get some sleep💙

Surgery was successful, both shunts are now functioning again 🙌 she’s stable, breathing well and all her vitals look good 🙌

Blood samples taken after yesterday’s surgery showed that Edie had low haemoglobin levels. So she needed a blood transfusion to give her some help 💪

This small act of donating blood that somebody, somewhere took the time to do has just helped Edie fight for her life.

If you can, please consider donating blood at your local blood bank.
Donated blood saves so many lives everyday!

Thank you all, beautiful people for praying and sending your positive energy to our little warrior again! You never let us down 🙏🙏
Text EDIE03 £? to 70070

Edie Recovering - Spider-Ede Appeal. Save a life, donate blood

Update – September 22, 2018

Last night the surgeon came, he said they could only fit Edie in at 10pm. He didn’t want to take her in so late.

So instead he manually drained 30cc of fluid using a syringe direct from the valve. This gave Edie instant relief, her pupils were smaller straight away.

Today Edie will go in for the surgery in the next couple of hours.🙏🙏🙏


Text EDIE03 £? to 70070

Update – September 21, 2018

Here we go again 🎢🎢 Wednesday night Edie graduated from the ICU and made it to her own regular room where we can stay in with her 24/7 🎉🙌

She has been training to breathe for herself having periods without assistance and she’s been doing great!

Edie has been breathing on her own with oxygen since 2.30pm yesterday. 🙌💪 On to today. The Doctor sent Edie for a CT scan to check her new shunt is working.

It’s not. 😔

Our girl needs surgery again! She’ll be going in to theatre tonight. She’s in a better clinical condition than last week with the pneumonia cleared up more but it is still a risky procedure.
Last week you all got her through, she had so many prayers and positivity sent! So we ask you once again to send her everything you have 🙏🙏🤞🤞


UK Text EDIE03 £(amount) to 70070

Edie in hospital room - Spider-Ede

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.

Text EDIE03 £? to 70070

« Older Entries