Naomi
Fight For Life Fund
Naomi
Naomi
Naomi

March 2013...

Money Raising

In September 2012 Sara and Jonny, owners of Yorkshire Fireplaces, High Street, Northallerton completed the gruelling and hilly Great North Run.  Massive thanks to them for donating half their sponsorship to Naomi's Fund, totalling an impressive £1100, and thanks to everyone who sponsored them.

Naomi's Fund to join charity Brain Tumour Research as we reach £40k

It has now been almost five years since I began the fund and it was my aim to reach £40,000.  This aim has now been achieved thanks to so many wonderful individuals and organisations and their acts of kindness, bravery and madness!  It's been a great support to us as a family during this time, but more importantly it has meant that all that money has gone to support research into this phenomenally tricky disease.

Naomi's condition is stable, although there have been recent scares, and is now ten years old, six years post diagnosis, almost five years post treatment - most brain tumour patients die within that time frame.  Sobering isn't it?

We are to continue raising money for brain tumour research and are going to become an umbrella group of Brain Tumour Research, a conglomerate of 20 charities and 17 umbrella groups who are united in their efforts to campaign for and provide funding to find a cure for brain tumours.  Many of the members have already lost a friend, a parent, a child to brain cancer, yet they still wish to help others.  I am proud to  raise further funds under their banner. Naomi's Fund will still exist individually within the charity and she may get to design her own logo.

Naomi's Fight for Life Fund Account

The HSBC account will remain open as 'Fight for Life Fund' so donations can continue to be paid to it.  It is now March 2013 and the PO Box will lapse in a month or so, so will not be used after May 2013.  This website will remain online until the domain is due for renewal in a few months.

THANK YOU

Thank you to everyone for your support and donations.  Please keep supporting us via Brain Tumour Research.  Thank you too to Mark Gower for setting up this website and updating it as well as being a raiser of funds.

GOOD LUCK

Good luck to Dave Jeal, Ali Merryweather (and maybe a few more fit people!) who intend to run the York marathon in October 2013 for Naomi's Fund/Brain Tumour Research.  Happy training!

And to Christina Hart who's going to sky dive....you're all crazy and we love it!

June 2012...

£1057 was raised by the Allertonshire, Stokesley Comprehensive, Broomfield, Knayton and Applegarth Primary Schools, as a result of Wear A Hat Day on 30th March, and will go to Brain Tumour Research, a conglomeration of brain tumour charities whose particular focus is lobbying parliament to enocurage them to raise finance and awareness.

The money raised was a great amount considering how close the event was to Sports Relief, and whilst the participation uptake was low, virtually all the primary schools in the Hambleton area, Northallerton College and Bedale Comprehensive, totalling 25 schools have now been provided with Head Smart information on the early detection, prevention and occurence of brain tumours. Again the Darlington & Stockton Times were great in supporting the campaign and raising awareness of brain tumour mortality.

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We have just returned from a holiday in Kissimmee, Florida. This was arranged by a charity called Kids Cancer Charity (Christian Lewis Trust) in Wales who for many years have enabled children like Naomi to stay in a villa in Kissimmee. Additionally they liaise with a place called 'Give Kids The World Village' near Orlando, where children with life threatening illnesses can stay living the experiences that children love, such as ice-cream for breakfast, celebrating Christmas, free entry to Disney World and a variety of other fantastic places. So a big thank you to both charities for helping us to achieve Naomi's dreams of seeing an orca and feeding a dolphin, we never could have done it without their assistance.

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As we've just about reached the £35,000 mark, we have been able to give the most recent contributions to Samantha Dickson Brain Tumour Trust and Andrea's Gift.

2011...

Naomi had her scan in July, which was clear and we were able to have a fantastic holiday at the Hotel de la Mer in Babbacombe, Devon. The hotel owner Luke Tillen is a fantastic chap who began THHN (Torbay Holiday Helpers Network) a couple of years back. He and his supporters made it possible for us to stay for free for a week and enjoy many great attractions in the area. Naomi and Amy got to swim in the sea for the first time - fantastic!

THHN supports many children and families like Naomi, please see their website for further details. Luke also does alot of running to support many good causes, including brain tumour research - an all round good egg!!

In September, Naomi entered Year 4, she continues to enjoy dancing; sings and plays recorder at school and has been enrolled as a Brownie. She has excelled at swimming. She has also done very well at Taekwando, having recently obtained her green belt (her fourth grading) and was almost double graded at a north east grading competition. Her 'master' gave her a trophy for doing so well. She has also taken up playing the keyboard so we're looking forward to a few Christmas carols!

All these little achievements are very healing, and although we know Naomi is at no less risk of recurrence, it is brilliant to see her enjoy these childhood milestones that many take for granted.

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I haven't been particularly proactive on the fundraising front, unfortunately Mark has undergone major thoracic surgery, this also meant we had to cancel the trip to Florida - next year hopefully.

However, we haven't been forgotten. Thornton le Beans Village choir raised money for the fund at their Christmas concert 2010.

The Northallerton Variety Company (of the Northallerton Musical Theatre Company) donated £500 from the proceeds of ticket sales following their New Year panto held at Northallerton Forum early in the year - oh yes they did!

Leeds Building Society donated £100.

A group of boys and girls from Northallerton College raised a magnificent amount, over £1600, by cycling the coast to coast and camping out during our so called summer. They braved torrential rain and storms, and all 16 completed it. Naomi met them all at the local college to have the cheque presented and was hugely excited about meeting the 'big boys and girls'.

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We keep our fingers crossed for next year, that all the family may be well at once! I intend to take on my nemesis - jogging - and am tentatively looking at running the 10km coastal run in Scarborough October 2012 - and of course will try and raise plenty of money for Naomi's Fund.

Brain Tumour Day (catchy huh?) is 30 March, and treats the day as an opportunity to wear a hat, quite appropriate I think. To try and raise awareness of brain cancer I hope to try and get the local schools to allow their students to wear a hat to school, as it's the last day of term, and hopefully people might donate a little bit at the same time.

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Anybody interested in knowing more or supporting research into brain tumours may find these sites useful - Brain Tumour Research which is made up of many brain tumour support groups and charities including Ali's Dream and Andrea's Gift who our fund has supported.

Andrea's Gift, now Brain Tumour Research and Support across Yorkshire (BTRS), funds a research team at Leeds who concentrate specifically on brain tumours.

Samantha Dickson Brain Tumour Trust, who we've also supported, is also funding vital research and allying with Cancer Research UK.

These charities are vital to research because funding by the major cancer research charities is miniscule, at 1%. Yet the statistics regarding brain tumours are dreadful, and apparently childhood brain tumour diagnoses are increasing by 5-10% each year.

A brilliant way to support any of these charities is by buying Christmas cards from their websites, you don't have to get out of your chair and it makes you feel good - well I hope it does.

Thank you and keep your fingers crossed.

July 2010...

The coffee morning, raffle and stalls held at the town hall on 5 May raised £2,000, plus £150 from a car boot sale we did with some of the leftovers - this has brought the total raised from May '09 - May '10 to £7,000 which we've given to CBTRC (Children's Brian Tumour Research Centre) at Nottingham University.

The pot is now empty again - total raised so far is £29,500 so looking forward to breaking through the £30,000!

Many thanks to everyone who helped and contributed in so many ways to the coffee morning - it was a brilliant total. Generous prizes were contributed by many local firms including Clinkards, Barkers, Moules Butchers, Pizza Express, Romanby Golf Club, Baldersby and Ravensworth Nurseries, White Horse Fish and Chip Cafe, Visage, Saks Hairdressers, Blink Beauty, and Chris Hammond Hairdressers.

March 2010...

Naomi is thrilled as her hair is now long enough to put into decent bunches. We spent her 7th birthday in Northumberland, and Christmas at home was wonderful. She is loving school and has recently begun attending sessions at local dance group Footloose. We have not wasted a minute of this last year. Of course having this time with her, makes the prospect of losing her seem even more frightening, yet the reality is that she is now in a critical period. Having passed the one year 'clear' marker, now is the time when tumour recurrence is more and more likely, with two years being the average point of recurrence.

I can't believe it even though I'm writing it - her next MRI is in July.

March 2009...

After such a fantastic start, we want to keep going. There wouldn't be a fund without all these contributions, nor would there be a fund if it weren't for Naomi!

At the end of October 2008, Naomi finished her chemotherapy, after fifteen months of treatment, 50 miles away from home, in hospital for up to seven nights at a time, every other week. All this for a tumour renowned for not responding to chemotherapy, that's how limited her options were. She bears the scars of three major brain operations, and has lost half her sight as a consequence.

In December she had her portacath (central line) removed from her chest, so no more infections due to the presence of a foreign body next to her heart, and no more being punctured with needles to access it. Finally she was able to return to her beloved swimming at Center Parcs where we stayed over Christmas. Having spent the previous Christmas in hospital it was enjoyed even more!

At the end of January, we went to Euro Disney, a fantastic experience for Naomi and her little sister Amy, and for Mum and Dad too. Both these holidays were made possible thanks to Gordon and Linda Swales, with the the support of Romanby Football Club teams, local businesses and the community, who annually raise funds for local good causes. They have done this for years following the death of their son in a car accident. They are amazing, kind people.

Naomi has started at Romanby Primary School, a few minutes walk from her new house. She has settled in very well, and is there every day, all day, except when she's on holiday! Center Parcs again soon and all being well a trip to Scotland for whale watching in July (provided by Make A Wish Charity). She is blooming as the short term effects of chemotherapy wear off, and she is almost brave enough to go without a headscarf as her hair comes back.

As we make these tentative steps towards a new normality, I am sometimes more scared than ever. As she edges nearer to the two year point at which this type of tumour recurs, I wonder how it would be possible to go through this again, or worse. But if is a gift to have her back, and THAT is what I remember as I watch her grow and laugh, and when she hugs me. I wouldn't have this without research. To be able to enjoy it with more certainty would mean the world, please keep helping us fund the research.

RESEARCH IS KEY TO FINDING THE CAUSE FOR THIS DISEASE
PLEASE HELP US FIND THE CURE