Tag Archives: dipg

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

DIPG Awareness Day – 17th May

MRI Scan of Brain with DIPG

In the USA, 17th May 2017 was recognised as D.I.P.G awareness day by 22 states thanks to the Michael Mosier Foundation. This date is significant to them as it is the date that Michael passed away after fighting D.I.P.G. They are working to get these states and more to recognise this day again for 2018. We believe that we need a similar day of awareness here and therefore want to extend the awareness day to the UK on the 17th May 2018.

What is D.I.P.G?

MRI Scan of Brain with DIPGD.I.P.G stands for Diffuse Intrinsic Pontine Glioma. This is a grade IV tumour which is highly aggressive and currently considered untreatable in the UK. It originates in an area of the brainstem called the pons. The pons is responsible for vital bodily functions such as breathing, swallowing, blood pressure, sleeping, eyesight and balance. On average, 25-30 children a year are diagnosed with DIPG in the UK, that is equal to about a classroom full of children. There is no known medical reason for a child developing D.I.P.G.

Can you treat D.I.P.G?

Due to its location in the centre of the brain and the diffused nature of the tumour, it is not possible to surgically remove it. Standard chemotherapy is also not an option due to the blood brain barrier ‘protecting’ the tumour. Radiation is usually offered to help shrink the tumour however due to its aggressive nature this will only prolong life for a short while. The median age of survival is 9 months with doctors usually stating between 2 weeks and 2 years. Only 10% of children survive past 2 years and less than 1% survive for 5 years.

In 50 years, cancer research has helped us improve survival rates for a lot of different cancers, however there is no difference in the treatment now to 50 years ago for DIPG sufferers. Here, parents (as DIPG is most common in children aged between 5 and 10) are told to go home and make memories. As the tumour takes hold, the vital bodily functions are impaired. However, the sufferer’s knowledge and understanding is not affected, therefore they are fully aware of what is happening to them, they simply cannot control it, becoming locked inside their own body. It has to be one of the most cruel ways to suffer.

What Can We Do?

We need to spread awareness. We need to get people talking about this, not ignoring it. Yes it is rare but it’s not rare enough. Less than 4% of funding available goes into children’s cancer research, and even less again goes into brain cancer research. We need the politicians talking about this more. Dame Tessa Jowell has recently called for improvements in fighting cancer and last year a Scottish policitian even addressed parliament about DIPG and the doctors in Monterrey, Mexico, at the Instituto de Oncologia Intervencionista hospital, who are seemingly finding ways to treat this tumour using Intra-arterial chemotherapy and immunotherapy. Sadly there were not many politicians present.

During Channel 4’s Great British Bake Off – Stand Up to Cancer, aired on 3rd April 2018, a story was told by parents about their son who had battled DIPG but sadly lost his life to it. It had people searching for further information about the young boy and learning about it. This is the type of awareness we need. The more awareness and understanding there is, the better. It plays a significant role in both the research and care for DIPG.

Get Involved

We would love for as many people as possible to get involved with some sort of fundraising on May 17th, to help raise funds and spread awareness of this horrible disease. Our own event will be our second #BakeForEdie day, hopefully we can beat the first one held on 23rd March, which raised in excess of £5000 for the Spider-Ede Appeal. However, if baking isn’t ideal for you then please consider some activity to help us spread the word, whether it’s a sponsored walk, run or even silence, or a raffle within your place of work. Maybe a non-uniform day at school? We do need to raise vital funds for treatment, but we also want people to know and understand what the 17th May is all about, and what DIPG is. So, if all else fails, please just tell someone who may not know about it. Explain it to them, direct them to this page. Let’s get people talking more.

The Spider-Ede Appeal
Part of the Bradley Lowery Foundation
Charity Number: 1174333

Donate online at JustGiving

Personal donations/collections can also be made into our Halifax bank account.
Sortcode: 11-00-54
Account No: 13747967
Please make cheques payable to Ashleigh Stading or Stephen Molyneux (Edie’s parents)

Companies can make a charitable donation to our Bradley Lowery Foundation account. Please make cheques payable to The Bradley Lowery Foundation/Edith Molyneux. Bank details for direct transfers can be provided on request.

Vist the Michael Mosier Foundation

Bake 4 Edie – DIPG Awareness

Bake4Edie Poster

On 17th May, we’re holding our second #Bake4Edie event, asking businesses, organisations, schools and stay at home worker’s/parents to hold or get involved in a cake and bake sale to help raise funds and awareness of DIPG.

For more information on D.I.P.G. and why we’ve chosen this date, please view our D.I.P.G. Awareness Day post.

Last time we reached our target of £5000! Please help us beat this on the 17th May! Feel free to print off and use the poster below to get your friends and co-workers involved too, and don’t forget to post your photos and tag them #Bake4Edie, or comment below and let us know you’re taking part!

Bake4Edie Poster

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!!! 🙌🙌🙌

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.

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