Tag Archives: dipg

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

Marathon Madness Completed

28701619_1680041792077041_522075600863843271_oJohn and Dave,

We thank you both for going out of your way travelling 3 different countries and pushing yourselves to your limits.
We thank you for taking something you enjoy and using it to make a difference!
For inspiring others and opening their minds.

You are true heroes, selfless and beautiful.

John completed 4 marathons in 4 days in 3 countries and Dave joined him for the last 2. This was all for the 6 Uk children with DIPG travelling to Mexico for treatment.

In the Uk, there is simply no hope for our children, we are told to go and make happy memories as inevitably they will die. Well we are not prepared to give up on our beautiful little souls, there is hope, in Mexico they are trying all they can to help our children and come up with an answer.
Our Uk government currently does not support or fund this treatment and so we have to do it ourselves.

That is when people like John & Dave step in, the aim of this Marathon Madness was to raise awareness and gain some publicity. But John also decided they would raise some much needed funds for us all along the way! He set the target at £2000 and we are so thankful to all that donated as that target has been exceeded and his crowdfund page is now on £2500!!! 🙌🙌🙌
http://www.justgiving.com/crowdfunding/Hammo76

Thank you for all that got involved, running alongside John & Dave, words of encouragement, donations this all means so much to us.
John and Dave don’t ever stop being you! We look forward to seeing what you come up with next John as we know you too well to think this will be the last 💪💪💪

A big thank you to the businesses who sponsored John & Dave even though the pair were more than prepared to fund it themselves (reluctant to accept money for their travel & accommodation)

14 degrees down – http://www.14degreesdown.com
Flo Gas – http://www.flogas.co.uk
Pearl Dragon Restaurant – http://www.pearldragon.co.uk
DG Technology – http://www.dg.uk
Proform Group – http://www.proformgroup.co.uk

All our love, Ashleigh, Steve and all of our Uk DIPG families here in Monterrey.

#cure4cam Cameron, Waringstown
#tousaveczoé Zoé, Southampton
#teamkaleigh Kaleigh, Essex
#helpluke Luke, East Lothian
#helplucy Lucy, Wirral
#fight4edie Edie, Wirral

Heroes Assemble at Liverpool Comic Con for Edie

Xt-Sup on the Albert Dock

We’d like to thank the members of the Stand Up Paddling group, Xt-Sup, who made Liverpool Comic Con take notice when they paddled across the Albert Dock in Superhero Costumes, with T-Rex in tow. Events like this catch the attention and can quickly become talking points, so we’re very grateful that they used this opportunity to raise awareness of the Spider-Ede Appeal. The following story of the event is by them, and the accompanying photos are by Chris Stading.

Iron Man on the Albert Dock

Last year as Comic Con 2017 approached we thought about having a paddle in superhero costumes. It was all a bit last minute and four of us ended up going, with Ironman being a particular hit with the younger members of the crowds down at the docks. It was good fun and nice to see smiles on people’s faces and we decided we should do it again.

This year the idea was suggested in good time and off the back of a popular group paddle in February there were loads of people up for getting their costumes on for a visit to Liverpool and a paddle around the docks this year!

We came across the Spider-Ede appeal on Facebook and decided our paddle was the perfect opportunity to have a collection and do our small bit to contribute and turn our superhero themed day out in to a show of support for the super Spider-Ede.

Superheroes and villains do not worry about trivial things such as wind and rain and 35 of them ignored the forecast and arrived at Liverpool Watersports Centre to take to the water on Saturday morning.

T-Rex Messing About on the Water

With a slight tailwind it was easy going to carry us all into Dukes dock next to the arena where the 2018 Liverpool Comic Con was in full swing. Heads were turned as passers-by were expecting to see costumed characters on dry land and not floating by with a T-Rex in tow! A quick turn around and we headed back through the Salthouse dock and into the centre of the Albert Dock to take in the surroundings while curious shoppers and tourists could get a closer look at us all before we paddled back to where we started at the Watersports Centre.

Another great paddle and massive thanks to everyone who came from all over to take part (special thanks to Craig and Bethan who had a 4.30am start to travel up from South Wales!). You all helped raise money for the Spider-Ede appeal and have some fun looking silly on the water.

As of now we have raised £170 from the collection on the day and online donations, so a massive thank you to all who donated and shared the appeal and helped spread awareness.

You can view more of Chris’s photos from this event on his Xt-Sup Flickr Gallery.

Hope

All

I know I’m not the most visibly active participant of our campaign, and most of the time, I simply don’t have any words! It’s difficult to say anything, or express how you feel when part of your life, your reason for being alive, a piece of your heart, has been crushed, torn apart, never to be the same again.

Everything seems so much worse at night, everyone at home is in bed and it makes you feel that much more isolated and alone.

So here we sit, in intensive care where our baby is fighting the biggest fight of her and probably all of our lives and I have to admit, that some days, the battle seems hopeless, impossible even? How can this beautiful little thing be going through something so devastatingly shit!! Even now, being where we are, doing what we’ve done, I can’t believe this is happening!

It’s hard staying positive all the time, especially when the treatment is working so well that the tumour is becoming swollen with the amount of destruction, but because her tumour was so big to begin with, the extra swelling is making her decline severely as if she was in progression! We are having to spend so much time in intensive care that the treatment fund is dwindling away, faster than it can be raised!

I question things all the time, thinking, have we done the right thing?! But then as I look at her, she looks like she’s listening to every word I say, even though I’m not talking, almost like she can hear my worry and feel my pain!

It’s at that moment that I get an email, an email that made what I was writing go in a very different direction…. At first it felt like I was writing in despair, in grief? But since this all began, when I’ve felt at my lowest, like there seemed to be very little hope, something happens, something that slaps me in the face and snaps me out of it!

This time is was an email with an attached letter from our local MP, who told us about a meeting they had with the Under Secretary of State for Health Lord O’Shaughnessy. It said that they had stressed the urgency for aid in these desperate times and to try and spur the government into action! They have asked that the government help contribute to the treatment expenses in our fight against DIPG! If they decide that there is something they can do to help it could change the outlook for so many children!! I can tell you that this email was a very welcome ray of light at a dark time!

Whatever happens with their decision I’ll leave you with this,

Without all of you, none of this would be possible, there are no words powerful enough to express our gratitude for what you are doing or to tell you how very proud we are of each and every one of you!

From the bottom of our hearts, thank you!!

Steve

Wirral Globe article: Politicians call on Government to support two children receiving inoperable brain tumour treatment in Mexico

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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