What we’re fighting for

Edie getting ready for her MRI scan

I spent a little while looking over this photo and deciding if I should post it or not. I’ve decided I should. Whilst it’s not distressing to look at for an outsider, this is the epitome of heartbreak for us. Spending a day in the hospital, whilst they sedate your baby to see if her tumour has grown. This is the reality of DIPG, it’s known for its aggression it’s known for its mercilessness. How could this happen to someone so small, innocent and fragile? How is that fair? It‘s not, it’s not fair to us, and it’s certainly not fair to Edie May. 😭

Please, please keep sharing our cause, please keep flooding your news feeds with her face, please keep telling anybody who will listen, and shout it to those who won’t. This is a life, a life that could be saved with the help of other people. In fact, it’s not just one life, it’s many. By helping save Edie, you’re saving our whole family, not just Ashleigh and Steve, not just Niamh and Lenny, but all of the Grandparents, Aunties, Uncles, Cousins and even friends that she means the world to. Please keep our mission going, help us with every fibre of your beings. You’ll be saving lives. Thank you

Edie getting ready for her MRI scan

Update – Monday 17th September

Edie in recovery from Surgery

It’s been only 1 week since we brought Edie in to hospital. We sit at her bedside everyday ❤️

We see the improvements Edie has made and she amazes us.

Edie is now on minimal support from the ventilator with only 40% oxygen concentration (100% when she came in)🙌

Her lungs are looking clearer, blood tests are coming back normal🙌

She responds to touch instantly🙌

We know she is our hero and so incredible. But to know that she also shocks the Doctors with her strength and resilience makes us even prouder of our little fighter!!

Against all of the odds she fights this monster

💙🕷❤️

JustGiving.spider-ede.org.uk

Text EDIE03 £? to 70070

Update – Monday 10th September

Edie Molyneux - Spider-Ede

Edie Molyneux - Spider-Ede
These past couple of days have been difficult, Edie’s breathing has been laboured, she runs a temperature of 38-40degrees that we are trying to get under control. We have lay in bed next to her thinking “is this it”, worried glances to each other, catching ourselves with tears in our eyes.

Because this is DIPG, no matter what you do, how well they are doing things can change so quickly. Right now we are still doing everything within our power but most importantly laying with our beautiful baby.

We just hope we can get her Immunotherapy this week and see some miraculous improvements because after all we have been here before.

🙏🙏 Once again we need you all to summon your positive energy and prayers to send them to our girl 🙏🙏
💙🕷❤️

JustGiving.spider-ede.org.uk
http://www.spider-ede.org.uk
Text EDIE03 £? to 70070

Update – Friday 7th September

Edie Molyneux - Spider-Ede, Ashleigh Stading

Edie Molyneux - Spider-Ede, Ashleigh Stading
❤️🕷💙 Long awaited Edie update 💙🕷❤️

Edie has been doing fine, I know a lot of people worry when we go quiet. But it’s really because not much has changed. She continues to play sleeping beauty, whilst every week she has an extraction of fluid from the cyst.😴

At first the surgeon was extracting 7/8cc twice a week, but this week he has increased the extraction to 12cc. Edie is now strong enough that she no longer has to go to the hospital for the procedure and it can be done in the clinic.

When we first found the cyst we put Edie on a course of steroids to help bring the swelling down, she is completely off steroids now but still has a little puffiness around the face.

Next week we really hope that Edie will be starting a course of immunotherapy again. Although she has been doing well and remained stable we need to be making a push to attack the tumour direct. 👊👊

She will continue to take the many natural supplements that we have been giving her alongside the immunotherapy and hopefully we can have some good results to share with you all before too long🤞🙏

As always keep Edie in your thoughts and prayers. Send her love, support and all of the positive energy you can spare. 🙌

With Immunotherapy starting back up again things are going to get more expensive and funds will begin to take a hit. Please consider attending any of the Spider-ede events, all funds will help her fight this. If you can’t make it to any events please donate anything you can towards Edie’s treatment 🙏

JustGiving.spider-ede.org.uk
Text EDIE03 £? to 70070

Hero Diaries – 9 months on

Lenny, Edie and Niamh

DIPG is an aggressive paediatric brain tumour, with a median survival age of 9 months from diagnosis. Today marks Edie’s 9 months.

We wanted to use this opportunity to focus on the fight so far and what affect DIPG has on Edie and her family.

Please share our video with your friends to show this can happen to any one of our children and has a devastating outcome for families all over the world. From a seemingly healthy perfect child to becoming critical in such a short time, Edie has defied all odds and has overcome each hurdle put in front of her, long may she continue to do so!! 🙏🙏

❤️🕷💙
JustGiving.spider-ede.org.uk
Text EDIE03 £? to 70070

Lenny

Lenny and Edie Molyneux - sibling love

Lenny and Edie Molyneux - sibling love
IronLen, Edie’s little brother had only just turned one when his big sister was diagnosed last November.

Over the time as well as the worries for Edie and for Niamh her big sister and best friend. We found ourselves questioning Len’s understanding, if the worst was to happen how much of his sister would he remember?💔

He went from being a boisterous wrestling partner for Edie to being the most loving, caring and gentle protector of his big sister ❤️❤️

When Niamh and Len travelled back home to England our fear was he would begin to forget Edie but that is far from the case. We video call and Len shouts “Eeeedddie” 😍😍
There is no doubt about it, he loves and misses his little big sister!👫

❤️🕷💙
JustGiving.spider-ede.org.uk
Text EDIE03 £? to 70070

Sisterly Love

Niamh and Edie Molyneux - Sisterly Love

Niamh and Edie Molyneux - Sisterly Love
💕👭 Sisters – A bond like no other.👭💕

With only 13 months between our girls they have always been best friends, they hardly fought, we’re always laughing and playing together, looking after each other and causing trouble together.

My heart breaks for Edie having to fight this at just 3 years old, but my heart also breaks for Niamh. She is 4 years old and had to watch her little sister through all of this, with understanding way beyond her years.

She has asked me so many questions about dying and heaven since this. She knows Edie isn’t well and knows more than we all think.

Before Niamh left Mexico with Auntie Kirsty we spoke about Steve and I staying here with Edie and coming home just a few weeks later, Niamh said “And Edie will be all better then?” 💔💔💔💔

I stopped, what is the right answer?? I could of gave her a perfect fairytale. But I chose to be honest. My answer was “You know Niamh, Edie might not get better” 😢😢

To have to try and prepare yourself for the worst is one thing, but then to have to try and prepare your 4 year old daughter for the worst is another. Her sister her best friend is all she’s ever known.

Edie, we all need you to get better, you fill the room with laughter and joy! Mischievous yet so sweet!! We know you are a fighter and no one will ever give up fighting with you! 💪💪

💙🕷❤️
JustGiving.spider-ede.org.uk
Text EDIE03 £? to 70070

Postponed: Greg’s Sponsored Climb

Due to storms being forecast on and around Snowdon at the weekend we have reached the decision to postpone Greg’s Sponsored Climb until the weather improves (date to be confirmed but possibly mid-September).

Greg is understandably upset but determined that the climb will still go ahead at a later date.

The conditions on Snowdon will be far too dangerous and treacherous for anyone to climb and none of the Spider-Ede team would want or expect Greg to put himself in any danger.

We’re sure you will all support Greg with this decision.

On behalf of Edie’s family we would like to thank Greg for all that he is doing and the amazing amount he has raised so far. We are also truly grateful to you all for the generous donations which have been made to the Spider-Ede Appeal through sponsorship for this climb which will, of course, be carried forward to the new date

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