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

Spider-Ede to Line Up at the Randox Health Grand National

Grand National Race Card for the Honourary 41st Runner

Organisers of Saturday’s Randox Health Grand National have awarded an honorary 41st place in the World’s greatest race to Edie. This massive show of support will help raise awareness of DIPG and Edie’s fight by bringing it to the attention of a truly global audience.

In 2017, Jockey Club Racecourses (JCR) created an honorary berth in the race for five year old Bradley Lowery, helping to raise awareness of Bradley’s fight with neuroblastoma, and they have continued to work closely with the Bradley Lowery Foundation (BLF) afterwards. It’s through this link with the BLF, who support Edie and the Spider-Ede Appeal, that this amazing honour has come about.

Edie’s place on the racecard is explained on the Randox Health website, where they wrote:

In the racecard, Edie’s red and blue silks represent the colours of her favourite superhero, Spiderman, who also appears as her trainer. Her age is listed (3) and her elder sister Niamh and younger brother Leonard are her jockeys for the day. Edie’s actual weight (14 kilograms) also appears.

Also featured are Edie’s parents and grandparents: her father Stephen and mother Ashleigh, and her grandfather Chris and grandmothers Hazel and Ann.

Her write-up in the racecard reads: Making her Aintree debut, Edie loves walking in the park, playing with her puppy Ellie and gymnastics. But most of all she loves playing with her brother & sister and cuddles with Mummy & Daddy. Sure to make an impact, so will be well supported.

Whilst you can’t bet on Spider-Ede at the Grand National you can back Edie by donating to the Spider-Ede Appeal via Just Giving or Text Edie03 £(Amount up to 10) to 70070.

You can read more about this story on the Randox Health website and also on the BBC News site.

The Jockey Club have also produced the following video to introduce Edie:

Weekly Roundup – 8th April

Hi all, it’s our weekly round-up post to say thank you to those who have held an event or participated in a sponsored event for us and to let you know what you can look forward to next week! As always, we want to say a huge thank you to everyone who is mentioned below, for those who have attended/supported and for everyone who has made a donation no matter what size. We appreciate you all ❤️💙

We are adding more and more events to our calendar so please take a look on this to see what’s going on in the next week on our Upcoming Events.

On Friday we had another Bingo night with Captain America! Due to the Easter holidays, the turnout was lower than last time however we still raised £650! Many thanks to all who attended and of course our own Steve Smith for donning the Captain America outfit again and calling the numbers.

Saturday morning saw the attic sale take place hosted by Edie’s Angels. The rain was heavy but that didn’t stop our angels, and they raised £695! Claire Hazler also raised £83 in cupcake sales, and a further £134 was raised from selling Spider-Ede merchandise, so just over £900 raised in total. Thank you to all of the angels, volunteers and those who braved the rain and came and bought items.

Steph Ward held a cake sale in Birkenhead Park by the Park run. Thank you to Steph for also braving the awful weather!

We also had three events taken place up at Marlowe Road Church in Wallasey yesterday. All held by Karen Stevenson, we had a Popcats party in the morning, a cake sale and tombola early afternoon, followed by a party with Mrs Freckles after that. A raffle was also held throughout the day. A huge thank you to Karen for organising all of this and of course those who attended. A total of £1625 was raised for the day!

Then in the evening the Clarence Hotel held a charity race evening, auction and raffle too. This was a great success! Thanks to all at the Clarence for getting involved in this and those who took part.

This week we also heard that a friend of Edie’s Grandad, Rob Aslett, has raised £1500 for a sponsored slim (lost 27lb, well done Rob!)

In addition to the above, thank yous are also due to Whieldon’s Butchers and their customers for collecting over £40 in the shop, and Halifax in Birkenhead have collected £500.

We have some totals in from last week’s events too. The Gladstone theatre night for Edie raised over £8300; the golf day in Prenton raised over £4090; the sponsored swim arranged by AquaSafe raised over £3590; and Easter Ede raised £2111!

Next week’s main event is the long awaited LFC Legends fundraiser on Friday 13th, with live music, Richy Sheehy will be performing ‘We’ve got Salah!’, an auction and more!

On Sunday we also have a Charity Race afternoon being held at St. Joseph’s Social Club (The Joey’s) in Birkenhead.

We also want to say good luck to

Hayes Travel ladies doing their sponsored walk (postponed from March when it snowed!);
Steve Copeland is running the Tunnel 10k;
A small group of age 3-4 children, including Edie’s cousins, from Town Lane Infant’s nursery classes are walking up Moel Famau.

Apologies if we’ve missed anyone out. Please let us know in the comments below. If you are holding a fundraiser or wish to, please email fundraising@spider-ede.org.uk so that we can send you our ePack and get you on our events calendar.

Donate online: JustGiving.spider-ede.org.uk
Or text EDIE03 £(amount up to 10) to 70070

Spider-Ede on TV!

Ashleigh has been interviewed on Mexican Television, Las Noticias Televisa Monterrey, about their journey, Edie and the hospital in Monterrey. You can watch the video on the television’s twitter feed. If you wish to donate you can do so on our JustGiving page.

Bingo Night, Friday 6th April

Join us for an evening of fun and laughs at our Bingo night with a side of raffle.

When: Friday 6th April at 7pm, eyes down at 7.30pm

Where: British Legion, Higher Bebington, Wirral

How much? £5 for half a book, £10 for a full book. Dabbers on sale for £1 too. Raffle tickets available as well.

Comment on here or drop Sarah an email if you want to join in the fun!

img_5207

Weekly Round – 1st April

Hi all, it’s our weekly round-up post to say thank you to those who have held an event or participated in a sponsored event for us and to let you know what you can look forward to next week! As always, we want to say a huge thank you to everyone who is mentioned below, for those who have attended/supported and for everyone who has made a donation no matter what size. We appreciate you all

We are continually adding events to our calendar once they’re confirmed or we know about them so please take a look on this to see what’s going on in the next week – Upcoming Events.

On Tuesday we had the highly anticipated Charity Evening at the Gladstone Theatre, featuring a whole host of singers and comedians including Charlie Landsborough, and hosted by Ricky Tomlinson. The evening was a great success! Edie’s Nan and Grandad, plus friends and family, attended this and thoroughly enjoyed themselves and were very overwhelmed with what everyone did for Edie. A huge thank you to Jimmy King who set it all up, Ricky Tomlinson, Charlie Landsborough and everyone else who took part and our volunteers who rattled those buckets collecting donations as well.

Tuesday evening also saw a Neon walk being held over in Gayton Primary School and co-ordinated by Nicky Ellis, a joint event for Lucy’s Pineapple Fund at the Spider-Ede appeal. They raised an amazing £1060 and a lot of fun was had by all. A huge thank you to Nicky for sorting this out and including our appeal.

On Thursday the sponsored swim across the Mersey run by AquaSafe concluded. We want to say a big thank you to AquaSafe for arranging this, the swim instructors for co-ordinating the swims and to the children who took part and of course well done for what you’ve all achieved!

Higher Bebington Sports College had a cinema running for the last day of term and raised £500 for the appeal! Thank you to Louise Lord who set this up and to all involved and those who attended as well.

The Mecca Bingo Birkenhead held a fundraising evening for Edie, with Bingo and entertainment from Tiny Tim and their own comedian Phil, who left Mecca to take up a career in comedy. Tequila provided fantastic live music. A total of £1091 was raised. A huge thank you to those involved, Mecca Bingo and Nanny Eileen for arranging it!

Despite the weather forecast and bad weather Thursday night, Good Friday turned out to be a lovely sunny day and our Golf tournament at Prenton Golf club still went ahead with a large group of golfers including pro golfer Paul Waring. Thanks goes to Joe Sephton who arranged this along with Prenton Golf club for hosting the event for us.

The amazing walk by Richie Hellon came to an end on Friday, he walked for almost 300 miles from Tranmere, Wirral, to Dover Athletic’s stadium. He suffered swollen and blistered feet, a slight panic on Wednesday night when he couldn’t check into his hotel, but he arrived on Friday around 1pm. Sadly the match was then postponed due to the pitch being waterlogged, however he still managed to get back home on the supporter’s bus and has so far raised an amazing £3475!!

Joseph Reilly’s lego competition raised over £261 and the lucky winner was Claire Jenkins, who guessed with the exact amount of pieces, 796! A huge thank you to Joseph for building the house and running the competition.

Today we’ve had three events running. The Rose & Crown pub in Wallasey had a Spider-Ede Fundraising day, and the Woodchuch Hotel also laid on an Easter Ede event. Both had a great turnout, and have evening events on so still going! We hope anyone attending is having a great time 🙂 Thank you to all involved for arranging these events, and also the volunteers who gave up part of their Easter Sunday to help out plus those that baked cakes and donated raffle prizes for it as well.

Tenpin in Cheshire Oaks also held another Bowling for Edie event today, raising funds and putting on entertainment for the children and families who attended. A big thank you to all involved.

This week we’ve also seen collections, raffles and final totals from fundraisers:
Co-ops fundraisers – £1757
Gala Bingo – £310 (in addition to a previous week’s collection)
Wickes Birkenhead – £213
Spider-Ede Bracelets – £220 (in addition to an already amazing amount raised!)
St Andrews C/E School non uniform day – £243
Sapphire Dance School, Ellesmere Port raised at least £800
Raeburn Primary has raised over £1700
Natalie Hooton’s Easter Raffle raised £347
Hairdressing by Claire – £200 raised from a raffle
Wirral Grammer Boys raised approximately £1850 holding a non uniform day for both Lucy and Edie
Wirral Tae Kwon Doe raised £110
Cambridge Road school in Ellesmere Port had a non uniform day and raised £155

Next week, on Friday 6th we have a Bingo night with raffle being held at the British Legion in Higher Bebington. There are still spaces/tickets available to please get in touch with us if you’d like to join in with the fun (with Captain America as the bingo caller you know it’ll be a fun night!)

On Saturday we have an attic sale taking place in New Ferry village hall, get on down and grab a bargain. There will also be Spider-Ede tote bags and kids t-shirts available to buy plus hand made items and of course refreshments will be available.

There is also a fundraiser taking place in Wallasey at Marlowe Road Church, 1-3pm, with a cake sale, raffle and tombola. You get free entry into the raffle if you bring a cake!

In the evening there is a Race Night being held at The Clarence Hotel in Wallasey. With live music and plenty of entertainment from 7pm onwards.

Also, for the month of April, Wirral council has nominated our appeal as their charity of the month as has the Baltic Secret Gardens. We want to say a huge thank you to all involved!

Apologies if we’ve missed anyone out. Please let us know in the comments below. If you are holding a fundraiser or wish to, please email fundraising@spider-ede.org.uk so that we can send you our ePack and get you on our events calendar.

Donate online: JustGiving.spider-ede.org.uk
Or text EDIE03 £(amount up to 10) to 70070

Spider-Ede Appeal Charity Evening at the Gladstone Theatre

Charlie Landsborough and his band

On Tuesday 27th of March the Gladstone Theatre in Port Sunlight, Wirral, hosted a charity evening in aid of the Spider-Ede Appeal. Compared by the brilliant Ricky Tomlinson, the evening starred Birkenhead Born Country Legend Charlie Landsborough and his band, and featured actor and comedian Tony Barton along with singers Joe Wall and Kearra Bethany. The evening was a huge success, spreading awareness for Edie whilst bringing a lot of enjoyment to a packed theatre.

Grandad Chris summed up his thoughts, saying “so humbling what these people are doing for little Edie, not just the stars on stage but also the backstage people, the girls with the buckets, and of course our mate Jimmy King!”

Chris also took a few photos of the evening, a selection of which can be found below. To see more view the full gallery on Chris’ Flickr account.

« Older Entries