familiesintrauma

Relief, Belief and Understanding


Leave a comment

A Very Warm Welcome to All Our New Members :)

Our logo

FACEBOOK ADVERTISING

After my very first Facebook Advertising campaign (and it was a very small campaign)  I was delighted to be able to have 65 new members sign up for the Facebook page – and hopefully you will all sign up for this blog too.  Families in Trauma is a  new social enterprise and we are aiming to record through video or audio – families who have undergone traumatic experiences – and in turn share these videos to help others on our website.

NEW PREMISESEast Neuk blog 008

We have fallen behind a few months due to believing that we were going to be moving premises – however, this has not materialised – and so – without boring you all with the details, I hope to be focusing more on my social media campaign and getting our videos on our website.

WEBSITE

If you do check the website you will see that there is a lot to still be done – but hopefully you will also join me along this path and share in the journey of establishing a site which can realistically have families or individuals talking about their ‘real’ experiences. I am more than happy to respond to any suggestions any of you may have.

FAMILIES IN TRAUMAEast Neuk blog 006

Most people who catch a glimpse of this site are drawn to the title – either because they or their family have  suffered serious trauma.  The consequences of this trauma can often be severe and when we start to look around for help – we find that, in reality,  there is not much out there! Although doctors and specialists try their best to fill our needs, there is often so much more required and that is exactly why Families in Trauma has been set up.  We need to go straight to the ‘horse’s mouth’ so to speak.

FUTURE PLANS

So we really are at the beginning of a journey together and I want to take you all along with me.  Having experienced a family trauma personally, I know, it is not something you will ever forget.   If you can’t talk  to anyone at the moment – then just follow along online or share this link for the blog or for the Facebook page with someone else if you feel it will help them. Please do everything you can to keep reading and sharing this information because you never know who it will help.

I used to wonder what is the ultimate aim of this new social enterprise , and finally realised, I don’t need to have huge goals or unachievable aspirations – if I can help just one person to get through one more day – then I have achieved a huge amount!!  We all know that a day in the life of a person suffering trauma can be endless – and you never know from the beginning of that day till the end of it – whether you will survive it – but if we can help individuals who are feeling like this to survive one more day, then we have achieved something of worth.  I do not feel this is too huge a goal to aim for and I hope you also will join me in this whenever you can.

Don’t worry if you are not feeling up to much at the moment – just keep reading and checking in – then when you feel more able – share what you can to help others.  It’s a great way to heal – one step at a time.

Advertisements


Leave a comment

First Interview for Families in Trauma – Kabuki Syndrome

Hi,

If you were like me when you first saw this title – “what is Kabuki syndrome”, then you are like most of us.  We go about our lives not aware of the difficulties that some families face on a daily basis and its only when you encounter someone who is dealing with a rare condition – do we start to notice.  This is why it is imperative that we all share information like this, for the sake of the families who have a daily battle. So if you can share this,  please do as it will help to raise awareness and generate more understanding and support.

I first met the family who have a lovely little daughter who has Kabuki syndrome a month or so ago whilst out at an exhibition which included Families in Trauma.  The father approached me and humbly said, “I’m not sure if this is what you mean by trauma – but it has been a trauma for our family”.  That is exactly what we mean!!

So what is Kabuki syndrome??  I’ve done a little research and obviously filmed the family involved, and it is a very rare genetic syndrome which affects around 1 in 32,000 children.  It affects many parts of the body and is characterized by distinctive facial features .  People with Kabuki syndrome have developmental delay and intellectual disability that range from mild to severe. Affected individuals may also have seizures, an unusually small head size  or weak muscle tone . Some have eye problems such as rapid, involuntary eye movements  or eyes that do not look in the same direction.

A wide variety of other health problems occur in some people with Kabuki syndrome. Among the most commonly reported are heart abnormalities so as you can imagine, along with all of the above, comes the risk of sudden death at any time .

This is the reality for all families who live with this daily – can you imagine how hard that must be for all involved?

As I mentioned we have filmed a lovely family from Kirkcaldy, Fife who willingly shared their story in the hope that it might help others – and it was extremely moving and inspiring.  The video will become available on our website in October.  Please watch out for this and share with anyone you can.

If you would like to contact me or make any comments on this post, please feel free to do so.