Hannah Louise Jones Fund

 

My name is Hannah Louise Jones, and I am 16. I started raising money for the Samantha Dickson Brain Tumour Trust (SDBTT).

I want to share my experience and help others who maybe in difficult times.

I was just like any other ordinary teenage girl, with many hobbies like piano, kungfu, gymnastics and skiing. I love my life and everyone in it. I started having small epileptic pauses which became worse in April 2008. I eventually got medication and it all settled down, I thought it was great, being back to normality, however the fits increased and the doctor requested a brain scan just to eliminate the small possibility of my pauses being caused because of a brain tumour.

In the summer holidays of 2008 is when reality set out, on Friday the 8th of August to everyone’s shock and disbelief, I was told I had a brain tumour in my right temporal lobe and I should go into hospital on Sunday ready for an operation. At first I was so shocked and upset, why me?

On the Sunday morning I insisted on working at the week-end job I had in a hotel before I went into hospital. Sunday came around very quickly and before I knew it I had everything set up and ready for my operation that Tuesday.

My first operation lasted 8hours, the surgeon at the hospital only managed to remove 5cm of tumour as he said he wasn’t confident to remove anymore as it was near my optical nerve and may have damaged my vision. It only took me 3 days to recover from this operation, I then went home.

We had to go back in on the 19th of August for the results, to find that my tumour wasn’t cancerous! I was given the choice by a different surgeon who thought he could remove the rest of my tumour or the other option was to monitor it and see how it goes. I chose to have the operation.

So on the 28th of August I had my 2nd operation, everything went well and the surgeon managed to get my entire brain tumour out, I recovered well and came home after four days. I was just relieved everything had gone as perfect as can be.

On the 15th of September whilst still being in hospital I was given the results from the tumour removed at the second operation and it was cancer! They called it a grade three anaplastic astrocytoma. I kept strong and took the news in my stride. Without my friends, family and amazing staff at the hospital, I don’t think I would be so positive, but I am very grateful that I have all of these networks.

I started my chemo and radiotherapy in September; I had 6 weeks of radiotherapy and six cycles of the chemotherapy. I didn’t really have much of a choice, but that’s the way it goes.

On 4th February 2009 I went back into hospital as the tumour had reoccurred. They were successful in removing tumour from an artery in my brain and inserting, but it didn’t go as well as the last time as I had a stroke following surgery. I couldn’t walk at first but am now recovering well with a small left-sided weakness. All the staff at Alder Hey Children’s Hospital were brilliant again. There are so many lovely staff and they are all so fantastic they make being poorly easier! Mr Mallucci and Dr Pizer are really amazing. After the third operation they changed the chemotherapy.

Now I have MRI scans every 3-4 months and we enjoy the times in between, as persons with brain tumours are never given the ‘all clear’ like with other cancers.

 

Petition

My family and I started a 10 Downing street e- petition as we believe this disease has to take a higher profile. The petition has now closed and we had over 4,000 signatures. I have also lobbied Chester’s new MP Stephen Mosley and he has met with me on several occasions and a good relationship has been forged.

 

Fundraising

I want to raise lots of money and awareness of my Hannah Lousie Jones umbrella fund with SDBTT because brain cancer has so little funding. The funds raised with SDBTT all go direct into brain tumour research and they liaise with me over brain tumour projects and what the account funds will be used on.

It is easy for people to say it gets little funds however action has to be taken quick if we are EVER to overcome this terrible disease.

Thank-you to everyone who has helped donated and supported me. With your help we can get one step further for research for a cure for this horrible disease.

As at March 2010 we have raised £ 61,917!!!!! and we’ve already started to spend the funds on research projects into high grade brain tumours.

If you wish to donate online please visit SDBTT – Hannah Louise Jones Fund

 

Nov 2009

I have met some fantastic stars and celebrities like Ollie in one of the hoodies and he now has an SDBTT pin on his hat.

I’d like to say a big thank you to Dan Allera of Allera Clothing Printers, for providing us with hundreds of hoodies and on a quick turnaround too. They’re brilliant for raising money and awareness.

I have sold hundreds of hoodies at my school and in my area. They have the SDBTT face to face logo on them and say; “Support Hannah Banana (my nickname) and “support brain tumour research.” You see lots of people wearing them in and around Chester and many more people want them! My oldest hoody wearer is over 80 and the youngest is 9 months old. Just goes to show, not all who wear hoodies are bad! I started the Hoody idea and it snowballed from there.

The hoodies have the ‘Head to Head’ logo of Samantha Dickson Brain Tumour Trust on the front, with “Support Hannah Banana” and “Support Brain Tumour Research” above and below the heads. We sell them for £20 each (plus small cost of postage) and they are made to order. Adult Sizes are: S, M, L, XL and XXL and they’re available in most colours. If you would like to purchase a Hannah Banana Hoody, please contact my Auntie Jan at: sdbtt.hannahbanana@googlemail.com

 

Logo on hoodies

Huge thank you to:

The Ship Inn in Handbridge they did a raft race on the River Dee raft race on 12th July 2009. They have also held quizzes and collection boxes and have raised in excess of £1000.

People at M&S Money have also been working incredibly hard to raise Money. Kelly and Jeff have both run half marathons which raised £1000 which will be matched by HSBC’s charity scheme. A whole department is sponsoring the charity by doing various fund-raising activities throughout the year. Here are a few of the fantastic and enjoyable events, selling muffins, sponsored runs and walks and even bag-packing at Sainsbury’s in Chester.

A big golfing event with Dennis Taylor as an after dinner speaker, that raised funds for SDBTT and two other children’s charities and loads of staff at M&S Money have bought hoodies too! and raised well over ten thousand pounds.

In February 2009 a charity Sportsman’s evening was held at Aldo’s Bar in Liverpool. This function was organised by my Uncle Nigel and his friend, Mick.

Ex- Liverpool player John Aldridge, was a very entertaining speaker (if you are over 18 Dad said). There were some fabulous prizes such as signed photos and shirts of Steven Gerrard and Fernando Torres, a signed Everton football and loads of other prizes.

We got some funny looks as we three ‘girls’ walked in. I think they thought we were the entertainment. We left before the entertainment started but judging by my Dad’s photos it looks as if everyone had a good laugh with the comedian, Willie Miller. The event raised over £3000 which is amazing. Big thanks to John Aldridge and Willy Miller who gave their time and full support at no charge

 

AFC Waverton Under 9 Jets have been amazingly supportive. Their Under 8’s team and all their dads have bought hoodies and when the Under 9’s Jets team won their league they were presented with “Hannah’s Cup.” I was so pleased – I’m their number one fan – they’re brilliant! Here’s a photo of the team in their black hoodies……

 

Kids in their hoodies
In 2009 we have had collections at Co-op, Asda, Sainsbury’s and even at Bangor on Dee races, and this was arranged by my Nain. I never cease to be amazed by people’s co-operation and generosity, in time, personality, and money.
In 2009 Ewan raised £30 selling cakes on a stall

Caergwrle garage collected £52 from customers and continue too.

Barrow Boys Pub Whip round £35

School sponsored event at my Aunties school raised £300

In 2009 Matt Burton did a Marathon and raised £650

 

2008

In November 2008 I went to see beyond the barricades at North Wales theatre and raise £384.40 through a collection made at the end of the performance.

The cast of this production also donated £150 from their company; they came out at the end to meet us and were all very lovely and supportive to my fundraising, and we keep in touch with them.

 

My previous primary school had a retiring collection at their Christmas event raising £410.24
I am also very grateful to the trust for organizing for me to meet Mcfly before their gig, it was such a surprise and they were all gorgeous and I was quiet for once. Stunned!

 

Local Hero Award – Child of Courage
I was presented with a local hero award – Dee 106.3’s “Child of Courage” in July 2009.

I also was presented with the BBC switch teen hero award in London in 2009, and it was an amazing event that will never be beaten, I had to go on stage with thousands screaming at me I was so nervous. I met and posed with N-Dubz, JLS, Fearne Cotton, Peter Andre (yes he really is that nice), Kimberley [girls aloud], but the best was meeting Alexandra Burke and receiving my award from her, she was beautiful and she was lovely with me.

Tony Mayled ran that London Marathon in under 4 and half hours and raised over 1,200, what a feat.

I plan to continue my fund raising for the trust and spread much more awareness about brain tumours, I hope that my story has given more people a positive view about the situation and also how being positive can really help you to progress in life, never give in, even though this is one of the biggest childhood cancer killers, and treatments are trailing behind other cancers that receive more funding than brain tumours do.

April 2010 has seen 3 clear scans so far, but I hope I have along way to go yet

Also how important it is to have fun and enjoy your fundraising activities, why not try a few of the ones we have had fun with, every little amount is worth it, from a few pounds to thousands. It all adds up.
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Planned events for 2010
Three peaks challenge in June, tallest in Scotland/ England/and Wales in 24hrs

Fiona Rackham running

Trevor doing the Iron Man UK challenge on 1st August and also Hurlston Hall Ball with Debbie Wright

Bag packing events

If anyone who reads this wants to raise any funds then please contact me Auntie Jan or Dee 1063 who can direct you further. I never thought this would not happen to me, and it has changed my life, and I now live for the moment and appreciate that life is for living.