Tag Archives: awareness
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
Are you going on holiday? Or even a day out somewhere different?? 🗺
Can you help us by wearing your Spider-Ede Tshirts? Spread the word and tell the world! ✈️🌍 🚗🌍 🚂🌍 🚢
If you haven’t yet got yourself a tshirt you can order one from the wonderful Nikki at 14 Degrees Down.
How far can Spider-Ede get?
You can post your photos on Facebook, Twitter or Instagram, make them PUBLIC and use #SpiderEdeTee so that we can see them, and let us know where in the world you are 💪💪
Alternatively you can send your photo direct to: firstname.lastname@example.org
Can you help?
We are spreading awareness of Edie’s fight and DIPG by painting rocks, writing on them and adding photos to the Facebook group #SpiderEdeRocks.
If you would like to join in here’s what you need to do:
- Join the facebook group #SpiderEdeRocks;
- Decorate a rock using acrylic paint, marker pens or anything else you find that works;
- Write on the rock:
- The Spider-Ede Appeal
Post a photo
Please hide again
- The Spider-Ede Appeal
- Seal the rock with PVA glue or varnish;
- Post a photo of your masterpiece to the facebook group #SpiderEdeRocks.
If you don’t use Facebook then just comment below to let us know if you’ve found a rock and whereabouts. We love to hear how far our rocks have travelled!
If you’d like some ideas of what to use for rock painting, here are some acrylic paint pens and a spray seal on Amazon which are easy to use and far less messy that standard paints with a brush!
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?
D.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.
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.
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.
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!
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.
The Jockey Club have also produced the following video to introduce Edie: