Vlog 4

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Right just before we start apologies for the shot angle I just noticed the cobweb and the fact the lens is a little grimy round the edges – I will dust before next time I promise but didn’t have time to reshoot.  Also anyone worrying that my doggie gets smacked he doesn’t I just knocked the slipper he brought me knocked onto the floor lol the chewed slipper I might add. I have to run now to work but sorry as well for the multiple posts today just so much going on.

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The First of My Inspirational Angels Series – Claire Halliwell

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Some Angels are only loaned to us for such a short time – I wrote this recently on someone’s blog (they know who they are) but it really is true some Angels are destined to spend only a short time on Earth others to remain and walk amongst us and some inspire others to be transformed.  As I have helped trying to promote Charlie’s Cause I have been amazed by some of the amazingly strong and compassionate people I have come in contact with.  There are events in life which if the strike will either make you or break you these people have stood up to adversity looked it firmly in the face and fought not only for themselves but for others, when most would curl up in self pity they have reached out to help others, they are each and every one of them truly inspirational and over the next few weeks I would like to introduce you to just a few of them.

I am personally really proud to introduce Claire Halliwell to you, as most of you are aware I have followed Charlie’s journey from the start because of my friendship online with his Great Uncle but since Charlie’s passing #CharliesArmy has grown unbelievably and standing proud at the front has been a remarkable lady who I am now proud to call a friend. so Claire I would like you to meet my readers and readers I would like to introduce you to Claire…

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1) Claire you have become the spokesperson for the family in some ways while they deal with coming to terms with the tragic loss of Charlie, how did you get involved in with Charlie’s journey?

I read about Charlie’s story in the national news papers. I wanted to help but wasn’t sure how to contact the family. Then I came across Charlie on Facebook just as the Aurora Kinase trial failed and I knew I had to do something to help.

2) You have designed the website for Charlie’s family what is your hope it can achieve?

I hope that people in the same position as Charlie’s family can find solace in the fact that other people are going through the same thing and are fighting for their loved ones too. I hope that families can turn to the website’s resources page when doctors have exhausted all available treatments to help them find orphan drugs, experimental drugs, clinics over seas and clinical trials.

3) You are also behind the petition, though I know a few asked about one, you were the one who stepped forward and took responsibility for organising it can you tell anyone who has not heard about it (though how they missed it I have no idea lol) what the petition aims to do.

During his treatment for Acute Myeloic Leukaemia, Charlie received the blood from an umbilical cord from a lady in the USA. The UK stocks of cord blood arevery low. It is upsetting that a country which is pioneering in so many areas is so slow on the uptake of storing cord blood. Cord blood can be used to treat many many illnesses and is being researched to help with many more. Those illnesses include: Parkinson’s, Alzheimer’s, Leukaemia, Lymphoma, Myeloma,Aplastic Anemia, Neuroblastoma, Children’s Cancer, Diabetes, Multiple Sclerosis, Stroke, Cerebral Palsy. Just think how many people are affected by these illnesses, not just those with them but their carers and their family and friends who are all indirectly affected. The petition aims to increase awareness amongst pregnant women so they can make an informed decision about ubc (umbilical cord blood) donation, something usually thrown away as hazardous waste which can save the life of another. Not only does the petition aim to increase awareness amongst pregnant women but it also aims for every major hospital to have the facilities to store ubc on a temporary basis while it can be transferred to a regional centre. If the UK had good stocks of ubc then those who need it could save valuable time for those who need to receive it who are often in the most vulnarable of positions and can not afford the loss of time in order to receive treatment.

4) You have also helped organise the twitter campaign #CharliesArmy #CharliesCause to promote the petition and as part of that I know we have had had some successes and some celebs we have gone right off naming no names lol but if you could have a dream celeb to get on board with this campaign who would it be?

Ooooh that’s a hard one. There are so many influential people out there. Personally, I would like someone who felt passionately about what we are trying to achieve. Gary Lineker’s son had leukaemia as a baby but then there are lots of celebrity mum’s who feel equally as passionate. Linda Robson has tweeted our petition and has said she is on the Anthony Nolan register, causes like this are close to her heart. It would be wonderful if she would like to promote the petition with us. I think if you are passionate about something people can feel it and want to get involved so my dream celeb would be the celebrity who really believes in what we are trying to do. If any celebrities would like to get involved they can contact us on twitter at @CordsforLife

5) Is there anything else you would like my readers to know?

Charlie has been the inspiration for this petition, his family have created a cause, which is pending registered charity status, called Cords4Life UK. I want people to know that the cause is there and does a wonderful job of creating awareness.
I also want people to know these facts about cord blood donation taken from Anthony Nolan:
It’s a risk free procedure that does not interfere with the delivery of your baby in any way
On average, every year 1 in 100 cord units will be used for transplantation compared to 1 in 1000 registered adult donors
80% of transplant requests would be met if the UK saved just 50,000 cord blood units. In the UK alone last year, 65,000 litres of cord blood were thrown away!
Up to 70% of people who need bone marrow transplants will not find a match. Banking stem cells improves those odds.

If your readers would like to sign the petition they need to go here: http://epetitions.direct.gov.uk/petitions/45622
HM Government E Petitions will send them an email to confirm they would like to take part – it is esssential that the click the link within this email to confirm their signature.

Thanks for the interview and the opportunity to spread awareness!

You are most welcome anyone who would like to read more about Charlie’s Journey or knows anyone who may need to access the resources page which has links to clinical trials all over the world can find it here or can find out more on his Facebook page here

Charlie Harris-Beard

25/06/10 – 08/02/13

Gone But Never Forgotten

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Day 19 – A song you’re currently obsessed with

Am I obsessed with any song at the minute, I don’t think I am what I have done is had a look at my iPod for my two most played now bear in mind I have my music on shuffle so it really does depend what mood I am in when a song starts whether I listen to the whole thing or not. So most played on my iPod comes up as…

I love the fact that the song seems to be about one thing which is sexual and fleeting yet is apparently about a deep love that transcends life and death, and I hope the Lady herself has a quick and speedy recovery from her surgery.  The second song is…

Day 18 – A song you have as your ringtone/want to be your ringtone

Will have to be creative today and give you the song I have and one I thought about having I am sure it is probably possible to arrange different ringtones for different people on my phone but I haven’t worked it out at the minute lol.  So if you ring me this is what plays…

This is one I am tempted to have.

Day 17 – A song that annoys you

Hmm not sure about this one usually if I don’t like a song I don’t listen to it enough for it to get annoying.  If I go back to my teenage years this annoyed me as it was number one for so long and it seemed to be played everywhere I actually liked it when it came out but the repetition drove me insane.

Actually its not as hard as I thought because when I thought back to my youth two more jumped out at me and as it is annoying day I shall share both.

If you can forgive me I will see you tomorrow xx

Day 16 – A song that holds a lot of meaning to you – Plus Give Away Reminder and General Catch up

This is another that is a hard category pure and simply because there are just so many to choose from.  So for today am going to try to pick a couple of more obscure ones rather than going for obvious ones.

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A reminder you can have the chance to win one of these limited edition bookmarks by leaving a comment over on this post here you have until Wednesday teatime to comment so get over there now it doesn’t have to be a long comment just say hello.

The other thing I really want to tell you about is a now segment that I am going to be starting about Inspirational People being involved with #CharliesArmy raising awareness and spreading the word about the petition has brought me into contact with some really amazing people who in the face of the worst realities any parent could contemplate have turned adversity into something positive.  They have fund-raised, promoted causes, started charities and above all supported others in their suffering.  They have fought not only for their own children but for all children at a time when most of us would be at our most selfish.  I hope you guys will get behind these people and show them how amazing the wordpress community is.

Day 15 – A song people wouldn’t expect you to like

Ohhhh preconceptions are so much fun.  I look like a mummy, I now dress quite frumpily as I have put weight on, and of course being the parent to a teenager means that there is always one person who believes I am as pure as the driven snow and have no post (amazing how they like to imagine hey were the immaculate conception).  These songs are more from my past in some ways and totally different but I still love them both.  First those of a nervous disposition or with fragile eardrums should possibly turn the sound down for those of you who appreciate either you will be turning the music up.

And I am pretty sure I don’t look like the typical fan for either of these bands

 

Day 14 – A song you like hearing live

Well it won’t take much imagination to guess who the first song is by, I waited thirty years to see them perform live and I have to confess was gutted that they didn’t perform my absolute favourite but this comes close.

The second one is actually more I song I wish I had heard live some things happen only once and I was too young to have been part of this as in actually going instead like millions of others I say transfixed to a TV screen watching history being made Duran Duran of course weren’t part of this bit as they were taking part across the Atlantic in Philadelphia but it is still a who’s who to 80’s pop.

Day 13 – A song you sing to in the shower

Hmmm now this is a tough one as I don’t sing in the shower, in fact I prefer a nice soak in the bath instead and anyone who has heard my singing knows that I only sing when the music is belting out full blast for a reason. I guess if I were to sing in the shower it would be to something I could dance about to at the same time so lets have a think about this – so many possibilities.

This second one was not a favourite when it came out but it has grown on me since

Day 12 – A song that reminds you of your best friend

Of all the days I think this is possibly the easiest.  My best friend and I have one of those relationships where due to real life we don’t get to spend as much time together as we would like to, in fact at times we can realise a month or so has passed without speaking but we also know that if the other needs us they will be there.  We have held each other up through some of the most difficult times anyone can experience, there have been countless phone calls in the early hours, nights out, swapped shoes, borrowed handbags which never return lol but most of all there has been the knowledge that there is someone who I can tell anything and never be judged.  Don’t get me wrong we don’t always approve of what the other has done, we might even have on occasion given each other home truths that we didn’t want to hear but that is the reality of true friendships – they are not afraid to be honest with you.  So these are not my songs they are Anna’s my best friend and partner in various crimes throughout the years.

This second one actually has double meaning because is was one of her mums favourite records which was played at her funeral but also a song that Anna and her sister would dance about in their living room to and whenever I hear it I can’t help but smile.