Wednesday, 18 September 2013

Social media and raising awareness of little known illnesses and incredible people!

This is a bit of an odd post, but one for some reason I feel compelled to write...... 

Now social media like Facebook and twitter can cause a lot of problems for some people - you only have to watch an episode of Jeremy Kyle and hear about some relationship destroyed by facebook. In fact there are TV programmes devoted to mishaps from social media sites. 

But Facebook can be useful in many ways..... Through it I have being educated on several inspirational people who are undergoing difficult times but still remaining positive and who work endlessly to promote awareness of their suffering. 

The main page that I follow is Claudia's Cause this is about a young girl who has Metastatic PineoBlastoma  a rare and aggressive tumour within her brain. Her family are a huge inspiration to me when I am feeling low and fed up, what they are going through on a daily basis is unbelievable. As a mum I find the whole family brave and incredible and I do feel honoured that through the regular updates we can be a part of the struggle with this horrible incurable illness. 

As well as round the clock intensive nursing the family are big fundraisers and advocates for charities such as  Headsmart an organisation devoted to helping diagnosis of brain tumours in children and young adults. Clic sargent a charity for children with cancer and Believe in Magic who help provide wishes and dreams for really poorly children. Only recently a Ball was held as a fundraising project and over £8000 was made to help these well deserved causes. It is this I find truly inspirational..... I don't know if I could have the energy or love to work tirelessly for others at the same time as witnessing the huge suffering of my child. I would like to think that I would be as generous with my time and as positive as Claudia's mum and dad, but in reality I think if I was in a similar situation I would fall apart. 

Only a couple of years ago I watched my dad going though a similar illness and I thought it unjust and cruel because he was only 50. Perhaps it is witnessing his pain and strength that made Claudia's story appeal to me so much? She seems to have the strength of a million men and seems to be fighting tirelessly against this disease which is debilitating her. 

It has touched me so much that I log into her page on a daily basis just to see how she is and how her amazing supportive family are doing. But when I have been reading the updates it seems to me that people are messaging offering their 'not so supportive advice!'  This annoys me so much-  how dare people pass judgement on this family when they are not walking in their shoes???? Could they help raise awareness and funds to help others when going though such life changing events?? Yes we as readers all have an opinion when someone is sharing intimate details of their lives with us....but respectful people would keep these opinions to themselves. 

That is just my thoughts anyway.... I wanted to help raise awareness of this amazing family and worthwhile causes they campaign for. I would love to be able to contribute more and offer a financial donation to the charities but until I get a job I am unable to. So if this post makes a few more people aware of the illness then I feel that is ok for now.... as soon as I am in a position to donate then I will. 

(If you want to read more of Claudia's cause then there is also a webpage here  ) 


  1. I think facebook is great for raising awareness for various things....This one is heartbreaking!

    1. It is so sad yet inspirational as well, you can see how much the whole family are experiencing and how strong they are as a unit.
      It has certainly made me more aware of this illness. xx

  2. My dog, Izzy and I write to children via the Post Pals charity. They support children with terminal illnesses (and their siblings) by encouraging volunteers such as myself to send happy post (letters, cards, small gifts etc). I discovered them online (possibly via Facebook) and have been volunteering for years now. I've discovered illnesses I didn't even know existed before. xx


Any comments and/or questions I am always happy to answer and will get back to you as soon as possible.
B xx