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   Louis Hughes

 

If Children have the ability to ignore odds and percentages,
then maybe we can all learn from them.
When you think about it, what other chance is there but to hope?
We have two options, medically and emotionally: give up, or fight like hell".

-Lance Armstrong

Raise Awareness with the

Neuroblastoma Wristband

 

Pain is Temporary, Quitting Is Forever.

-Lance Armstrong

 

 

     “There are 2 ways to live your life.

  One is as though nothing is a miracle. 

 The other is as though everything is a miracle.”

 Albert Einstein  

 

 

Other Related Sites

There is NO direct government funded research into this Neuroblastoma and drug companies only fund research into diseases that will make profitable returns for their share holders.

Neuroblastoma is not one of those diseases.

 

When Samantha was first diagnosed with Neuroblastoma, there was very little information on this nasty disease available, and everything we learnt was from other parents via the internet.

The Neuroblastoma Society, Georgie's Fund, Thomas Ball, Beebo and Robyn Brookes Charities were all founded by parents, determined to make a difference in fighting Neuroblastoma.

Their bravery inspired this website and enabled us to join the battle in spreading awareness of this childhood cancer, and to provide as much information as possible to others that is Neuroblastoma related.

 

Children That Have Been Affected by Neuroblastoma

Please have a look at the pages of some of the bravest small children you will ever come across.

 

Ariella Leah

http://www.myspace.com/ariellaleah

Toby Barrett

http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=toby1

Australia

On the other side of the world in Australia, is Kahlilla Blyss, I call her my twin, she was born on the same day and year as me, she looks a little like me and was diagnosed with Neuroblastoma Stage IV around the same time as me.  What are the chances of that happening?  It is certainly a strange coincidence that we have so much in common and both got such a rare childhood cancer. 

Hopefully we will meet one day.

Click Kahilla's Pic Below for her story

Jay Bull is a real inspiration to us all, he fights tirelessly in Australia to publicises NB and has won many awards, and is regularly in the newspapers. He really is an amazing young man!

Please visit his website for the full information on Jay's Journey.

 

Olivia Lambert

Olivia is a beautiful girl from Canberra, Australia please drop by and read her story

 

 

Friends who have earned their Angel Wings.

Their Spirit and Courage Will Live Forever.

When I was first Diagnosed with this nasty disease, I was inspired to document my own battle against Neuroblastoma after reading about so many brave children and their parents who were joining together to raise awareness of this deadly childhood cancer.

Priceless information, support, courage and strength was gained by these very brave and special people sharing their story with the world, so please join me in making sure there memory will live forever.

Katie Benson

Amelia Price

 

Christi Thomas

Chiara Valle

Jamie Rendall.

 

 

 

Neuroblastoma Information

 

A fantastic mailing list in which parents from all over the world discuss everything Neuroblastoma related, Please sign up.

Alternative Treatment

As Parents we want to be aware of all treatments available to us, and discovered treatment which is not available in the UK, but in a Hospital in New York called MSKCC.  They offer treatment called 3F8 Monoclonal Antibody Therapy.  To begin this treatment expect a deposit in the region of £300,000.

 These antibodies have been around since the 1980's and would not still be available if they were not doing something useful.  However there are no published results to say that antibodies improve survival, and with large amounts of money involved, it would be advised to listen to your head as well as your heart before making any decision.

To consider this treatment, a large fundraising campaign would be required like the Robyn Brookes Appeal.

However I have spoken with many parents with some wonderful stories about this hospital and their work.  In many places around the world, if the treatment fails, they give up leaving parents heartbroken and helpless but the Memorial Sloan-Kettering Cancer Centre can offer new hope and there are some inspirational stories to read from this centre.

We created this page to raise awareness of Neuroblastoma and offer as much information as possible to parents such as ourselves. We are not able to offer any advice on this subject but only direct you to information that you may find useful.

 Please see the links below for more information on appeals, treatment information and other parents that may be able to help advise you.

 

 

Dylan Hartung Appeal

Connor Gerber

 

Maybe just maybe there is some good news on the horizon as Our friends at Georgie's Fund have recently discovered the Cancer Vaccine Institute http://www.cancervaccine.org.uk/ basically they are researching into cancer vaccines, taking a bit of the tumour making it safe and injecting it back into the body, getting the good cells to recognise the bad cells and getting our bodies to destroy the cancer itself. They are a fairly new charity but are based at St. George’s Hospital, London as well as working closely with the Marsden.

They are starting trials this month with Osteosarcoma, Rhabdomyosarcoma and Neuroblastoma patients. The good thing about this trial is that there are very little side effects apparently as it’s using the bodies own material rather than toxic drugs.

If you have any questions or how to help, please contact Georgie's Fund who are always happy to help.

It's very early days, but I wanted you to know all the hard work that's going into beating childhood cancer and once again mostly by parents.

Remember,Together we can make a difference.

Keep Children Smiling

 

    

 

Post Pals is a fantastic site that brings smiles to so many children, when the postman brings sick children postcards, cards, small gifts from all over the world from people like you.

You too can bring a smile to a child at little or NO COST!

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If Children have the ability to ignore odds and percentages,
then maybe we can all learn from them.
When you think about it, what other chance is there but to hope?
We have two options, medically and emotionally: give up, or fight like hell".

-Lance Armstrong