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

John Hammond’s Stadium Run

So as you all know John Hammond has been doing lots of things to help raise awareness for DIPG, and fundraising for Edie. John is also on RADIO CITY TALK LIVE at 2:20pm today to talk about his latest venture!! He’s planning a stadium run, you can read his statement below! Thank you once again John, you’re a hero!! 🙌🏻

“My plan to run from Man City to Man Utd to Goodison and finishing at Anfield on the 3rd March to help raise £1000 for young Edie is still a definite goer but my idea of getting a £250 donation off each club is definitely not a goer 😭 Liverpool and Man City have said No, and no replies from the other 2 clubs. I knew it would be a long shot getting £250 out of these millionaire clubs but I won’t give up just yet.

Radio City Talk have invited me into the tower tomorrow afternoon to talk about my idea and I will be using this to plea to the clubs and also rich footballers, rich local businesses, rich local entrepreneurs, anyone who’s got a few bob 😬 I definitely won’t be asking for a penny off the people out there who donate and help me each and every time I come up with something.

I already have £400 donated from 2 local businesses in Carpenters Solicitors and Natalie Henshaw bootcamp 66 so huge thank you to them.

If anyone has any ideas or would like to help out in any way please feel free to send me a message 👍”
Here’s a map of John’s run too so you can see how far he’s going to go!! ❤️💙

Stadium Map Run

Richy Sheehy’s viral hit song “We’ve Got Salah” released!

We’re delighted to announce that “We’ve Got Salah”, the viral hit song by Richy Sheehy (aka Kevin Murphy, Cork’s biggest Liverpool fan), featuring Marc Kenny, has now been released by Slide Away records! All proceeds raised from this single will go to the appeal so please get buying and sharing! You can purchase it online in all formats at http://smarturl.it/LiverpoolSongWGS.

Here’s the video to accompany the charity single.

Just Childcare Nurseries Raise £6,961 for Edie’s Treatment

Back to news Just Childcare Nurseries Raise £6,961 for Edie’s Treatment

Thanks to the amazing efforts of Just Childcare team members, parents and children, £6,961 has been raised for the Spider-Ede Appeal.

Since they were very little both Edie and big sister Niamh have attended the Park Wood Day Nursery in Bidston, Wirral, right up until they were told of Edie’s heartbreaking news. Devastated by the news the staff of the nursery made plans to help in any way that they could and, along with their colleagues and parents from across the Just Childcare group, they’ve done an amazing job.

As soon as the staff, parents and children of Just Childcare nurseries heard about Edie’s plight, the fundraising began. Cake sales, sponsored events, games and raffles with amazing prizes donated by parents and local businesses were set up to raise money – all running up to our Superhero Dress Up Day fundraiser on Tuesday 6th February.

That day, hundreds of children came to the rescue dressed up as Superheroes to raise funds. Little Edie loves Spider-Man, so it seemed only appropriate that our fundraiser be superhero themed. By the end of the day, our nurseries had raised an amazing £6,961, including a £1,000 donation from Just Childcare.

We would like to add our thanks to those of Park Wood’s manager, Hannah, for all of the staff, parents and children who have made this fantastic effort on behalf of Edie.

Hannah says:

It has been so heart-warming to hear about how much effort the other nurseries and their parents put into this fundraiser, despite not knowing Edie personally.

We would echo that, wholeheartedly about each and every one of our supporters, fundraisers and donors. You are all amazing.

You can read more about Just Childcare’s fundraising efforts on their website and view some photographs from their superhero day too.

“We’ve Got Salah” available now for Pre-Order

We've Got Salah!

We are delighted to announce that the viral hit song “We’ve Got Salah” will be released on all formats on Friday 16th February with all proceeds going to the Spider-Ede Appeal.

Featured on Soccer AM, The Daily Mail, Daily Star, The South African, Egypt Today, ESPN and many more, the tune quickly went viral after Richy Sheehy (aka Kevin Murphy ‘Corks biggest Liverpool fan’) and Marc Kenny performed the song outside Anfield prior to Liverpool’s 4:3 victory against Manchester City (14th Jan, 18). It’s even had the Jurgen Klopp stamp of approval.

Richy Sheehy​ belts out the viral hit featuring Marc Kenny​ and is available to Pre-Order right now via Slide Away Records.

Thank you Wirral Advanced Motorcyclists

On Tuesday 13th February, Edie’s Granddad Chris was invited to the Eastham Ferry Hotel to attend the AGM of the Wirral Advanced Motorcyclists (WAM).

Chris (right) receiving the cheque for £1000.00 from club Chairman, Ken Smith

During the meeting Chairman, Ken Smith, informed members about the battle our little superhero, Edie, is currently going through. Granddad Chris was asked to say a few words to the members about how things are going in Mexico and Chris informed them about Monday’s positive news, which was applauded by every member. Granddad Chris was then presented with a cheque for £1000.00, with the promise that further support would be given during the year. The cheque was passed over with one condition … that Steve, Edie’s Dad, doesn’t spend any of it on cakes. Steve is an active member of WAM, and it seems that they know him very well.

We would like to send our sincere thanks to the Committee and members of Wirral Advanced Motorcyclists, not only for the £1000.00 cheque received today, but also for the support they gave when their members helped out during a recent bucket collection at a freezing cold Tranmere Rovers match.

Pictured is Granddad Chris (right) receiving the cheque for £1000.00 from club Chairman, Ken Smith.

Positive News from Mexico

Edie had a follow up appointment today and from what the doctors have said it’s pretty positive!

Edie after receiving her fantastic news.

The area of enhancement from the first scan, although bigger, was no longer enhanced, this could mean that the tumour is actually dying! Another good thing was the spectroscopy values, in particular choline, the amount of choline present tells you how much cellular membrane turnover there is, or in other words how active the tumour is. Well the value of choline has halved since the last MRI! This would say that the growth of the tumour is caused by necrosis (tumour cell death) and inflammation.

With these results Edie is now a perfect candidate to be given another type of drug that makes the tumour more receptive to chemotherapy and immunotherapy drugs, and we start her with those tomorrow.

Hopefully we can build on this and continue breaking the tumour down to nothing.

As you can see, Lenny found the meeting very interesting! 🙂

The Wirral Globe has published an article on this news, along with some updates on the appeal, you can read the story online at: Brave Edie receives fantastic news during treatment for inoperable brain tumour in Mexico.

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