I don't use the word hate. It is too strong, too negative.
However, there is one exception, one thing that drags this word out of my mouth every time it is mentioned.
Every time I hear about a desperate young child suffering from a "rare" form of cancer, I am already anticipating the name. Then I hear it, and my heart sinks.
Neuroblastoma.
I HATE neuroblastoma.
I'm sorry that this is not an upbeat blogpost but my aim is not to upset you. My aim is to educate you and inform you of how you can make a difference so that one day this will all be a distant memory. Even if you wish to read no further, I would urge you to read up on the signs and symptoms of neuroblastoma, it could save the life of a child that you love!
I have followed the journeys of many beautiful children suffering from NB. Some are still fighting, some are now in remission, others were not so lucky. NB is vicious, if a child defeats it once, there's a high chance it will return and they will relapse. The trouble in the UK is that if they do relapse, the NHS does not offer any treatment and children are sent home to await the angels. Families have to raise a huge amount of money (around £500,000) to send their children overseas to get the treatment that could save their life. Sometimes by the time enough money is raised, the children are too poorly to travel.
Although it may not be a representative sample, you can get an idea of the devastation this disease causes by looking at the Post Pals website (read my blog about Post Pals here). Since Post Pals was founded 10 years ago, 40 of the children have sadly passed away. Of those 40 children, 17 had neuroblastoma. That's almost half. Yet this disease is so often described as "rare"!
Onto how you can help... AWARENESS is always the key - with awareness comes funding, with funding, research and with research, a cure! Thankyou so much for reading this far, that's a step in the right direction. Please join me in spreading awareness about neuroblastoma!
If you could SPARE A FEW COINS, another way you could help is to visit the Families Against Neuroblastoma website and look at their current appeals. There you will find a list of children suffering from NB and in need of donations to help fund their treatment.
One young girl currently suffering from neuroblastoma is beautiful Talia, who lives in America. You may have seen her on the Ellen Show, or have come across her make-up videos on Youtube. I have been following Talia's progress for many years and she is one of the most inspiring girls in the world.
(source: aidens-momma.tumblr.com)
Unfortunately, having battled NB for several years and fought numerous relapses, she is now reaching the end of her life. A Facebook event has been set up this weekend, urging people to LIGHT A CANDLE FOR TALIA and offer words of support and prayers.
UPDATE 16th July - Talia sadly passed away this morning. Godspeed sweet girl.
And finally, on Sunday 11th August, Les Mis and Phantom are having a football match and family fun day to raise money for charity. Some of the money raised will be going to Great Ormond Street Hospital in honour of a little girl, Lizzie, who is currently fighting neuroblastoma. You can DONATE via the Les Mis V Phantom website, and even buy tickets to be there on the day and join in the fun!
Thanks for reading!
Emma Kate
xx
Remembering...
[Update 29th September] Robyn, the feisty video-maker who sadly passed away this morning.
[Update 11th July] Adam, who sadly passed away today, 4 days after I wrote this blog post.
Jamie, the lego-loving superman for whom Post Pals always release not a blue balloon, but a pink one - his favourite colour!
Katie, the bubbly little princess whose smile is incredibly infectious!
Cheeky, Tiny Sophie Dot - this video of whom used to make me smile, but now brings tears to my eyes.
Holly, a girl with attitude, wisdom beyond her years and a deep love for her little sister and brother.
Sweet Olivia, the world's most caring, helpful, devoted big sister and daughter.
And so many other young warriors who fought neuroblastoma and are no longer with us ♥
