Generous Donation in Memory of Tommy

As well as to raise awareness and money for more research into childhood brain tumours, we set up Make William Well to provide a resource for other families going through this journey

As such, we receive regular requests for help and we do all we are able to. One of the hardest things about this, on many levels, is hearing back from parents who tell us that their child didn’t make it

We recently received such news from Todd and Becky, the parents of a young boy called Tommy, who had reached out to us previously for advice

On this occasion though they also told us about a fundraiser they had organised originally in Tommy’s memory and then also in memory of Michael Shiel (a dedicated supporter of theirs whose initial idea it had been to organise the fundraiser)

They managed to raise a phenomenal £3,044.48

We confirmed that 100% of all money donated through our Supporter Group is ring-fenced by The Brain Tumour Charity for research specifically into childhood brain tumours and this week the money was paid into our account

Tommy was an extremely brave boy, smiled ‘till the end, never let anything get him down and made his mummy and daddy proud beyond this world

We are humbled by how Tommy dealt with this wicked disease and in awe of his parents for holding such an event in his memory. We’re also grateful beyond words that they chose to donate it via our Supporter Group

If you would like to make a one-off donation or even set up something regular, please visit our Supporter Group Page and be generous so that children like Tommy stand a better chance

Interview with TheExtract.co.uk

It has never been easy talking about what William has been through to journalists, especially since we have been misinterpreted by the press in the past, although I’m happy to say I’ve been fairly represented here

If you’d like to help us in our battle against childhood brain tumours, please click here

For signs and symptoms, as I mention in the interview, please visit headsmart.org.uk

To read the article click here or on the image below

TheExtract Interview Post

1000 Likes!

A massive Thank You to all those who have liked our Facebook Page and stuck with it!

Every Like makes us feel more and more like what we’re doing is worthwhile and gives us the confidence to continue sharing our story and trying to help William and other kids benefit from what he has been through

So, genuinely, thank you so much for sticking with us – to help us celebrate it would be awesome if anyone who hasn’t already donated would support us in helping children with brain tumours by clicking here

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Kielder Day Out with The Brain Tumour Charity

We had an awesome time with The Brain Tumour Charity yesterday on one of their Family Days (we attended something similar in 2017 and in 2018 they took us up in a helicopter above Silverstone!)

This year William, Charlotte, Mum and Me spent the day at the Calvert Trust, Kielder and enjoyed a go at…

An indoor climbing wall (still can’t believe he managed to make it all the way to the top!)

A zip-line!!! (video to follow on Facebook…)

 A King Swing – puzzling name but you’ll understand when you see the Facebook video…

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Can’t begin to say how much of an awesome organisation The Brain Tumour Charity is – aside from being so supporting to patients they’re extremely forward thinking when it comes to research (see Brains Matrix) and innovative when it comes to patients learning from other patients (see Brian) which are just some of the reasons we are so proud to be a Supporter Group

That’s also why this year we’ll be putting ourselves through hell by walking 84 miles across England along Hadrian’s Wall in just three days carrying all our own camping gear PLUS I’ll doing the Great North Run just two weeks later!

So, PLEASE make some of this pain worthwhile by sponsoring us or attending our Fundraiser in Newcastle on Bank Holiday Monday 26th August – all money raised will be spent on helping children like William with brain tumours

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A Cure Can’t Wait

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Ok, so donations are starting to come in at our JustGiving Team Page (thank you so much to everyone who has donated so far) and in just over two weeks time we’ll be setting off on our Hadrian’s Wall Challenge (fingers crossed for better weather than today!)

This year we’ve teamed up with The Brain Tumour Charity and just like in previous years we’re looking to raise money and awareness for a specific purpose.

Two years ago we wanted research into cannabidiol to be carried out on childhood brain tumours so that one day it could lead to clinical trials – that 18 month research project has now been completed!

Back then the prospect of a clinical trial seemed like a pipe dream although with:

  1. recent developments in the press and in law, and
  2. the increasing acceptance of adaptive clinical trials

we now believe that trials into cannabinoids could be imminent, especially given who we’ve decided to team up with…

I recently received a personal email from Sarah Lindsell – CEO of The Brain Tumour Charity and this one sentence, which still makes me very emotional, I believe, says all you need to know about why I am so confident that teaming up with them is the best way forward for William and kids like him:

We are working in a system that is decades old and not fit for a different world. We have to change this, no matter how hard, for the sake of all those with this disease today and diagnosed tomorrow. I can promise you, we will not give up until we have

Discussions with research institutions are happening now in relation to the setting up of adaptive clinincal trials into cannabinoids and gliomas although as usual there are numerous bureaucratic hurdles that need to be overcome and no doubt the intention will be to look into adult brain tumours first…

As I’ve mentioned in a previous post only three drugs have EVER been developed for childhood cancers, only one of which was for a childhood brain tumour compared to the dozens there have been for adults – this is because children are second thoughts in the drug development process and paediatric tumours are usually very different from their adult equivalents

Please help us change this and for once make children a priority by donating to one of our fundraising pages

I’d like to sign off in the same way Sarah does in her emails to me…

A Cure Can’t Wait

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Wax Forfeit…

Ok so… someone suggested that a good way to increase our sponsorship money for The Brain Tumour Charity would be to carry out forfeits!

The total on our Facebook Team Page stands shy of £400 and the more money raised, the more of me I’m going to be having waxed on 10th August

If you want to get a bit more for your money, I’ll also be waxing more as the number of tickets sold for our Fundraiser increases

And to top it off, if I reach the goal of £3,000 and 100 tickets it will be filmed live on Facebook…

So, here’s me signing off safe in the knowledge that given how many donations we’ve had so far and how many tickets we have sold, there won’t be a whiff of wax a week on Saturday!!!

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All Party Parliamentary Group on Brain Tumours – the Ketogenic Diet

I attended this event last week – it was held at Portcullis House just opposite Big Ben and the Houses of Parliament.

I was invited to The All Party Parliamentary Group on Brain Tumours, basically a meeting held to discuss brain tumours attended by various members of parliament, by the charity Brain Tumour Research.

During the last meeting, which I was unable to attend, Dr Wai Liu, who I went to see present at St Georges University last year, gave a presentation on Cannabis (minutes here). This time the main topic was the Ketogenic Diet.

The main speaker was Sue Wood from Matthews Friends (who was there with Matthews mum and founder of the charity Emma Williams) and she gave an excellent presentation on the likely reasons for why the diet might influence the development of brain tumours.

There were also first person perspectives from a medical professional and an extremely knowledgable researcher whom I had met previously, Andrew Scarborough. They both recounted compelling accounts of how they had used the Diet to manage their own brain tumours.

It was clear from the event that much more research needs to be done before the diet can be recommended clinically although there seemed to be a general consensus in the room that those diagnosed with a brain tumour should at least be given information on the potential benefits.

Through speaking to those involved with the diet as well as parents who have asked for my advice further to Williams progress, I would say that at best the situation is confused and at worst there are medical professionals who (extremely ignorantly in my opinion) vilify the very suggestion that such a diet should even be considered.

As mentioned above, further research is clearly needed although in my opinion patients should be given information on the potential benefits of such a diet on brain tumours and at the very least those who so vehemently oppose the diet should be properly educated.