familiesintrauma

Relief, Belief and Understanding


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Gearing Up for our Launch – April 18th!

Before I go into the launch of our first 3 videos in April, I thought I’d share with you a little of where I visited in December as I haven’t done that yet.  It was touch and go as to whether we could actually get there, due to one thing and another – but finally we did.  Steve, my husband, had always wanted to get some lessons from a real flamenco guitar  maestro and in December that’s exactly what we did!  The rest and relaxation were just what we needed – and it reminded us also that we are still individuals, and that even if we are going through difficult times, it is essential to try to recharge our batteries.   We visited Malaga and all the other little villages and towns along the Costa Del Sol.  My favourite part was the weather as it was 25 degrees C – no one could complain at that!  Here goes:

 

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Up in Mijas – seems to be a favourite haunt for many visitors.

 

 

 

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Many people come from all over the world to see the lights in Malaga – we can see why!

 

The weather in Marbella was very obliging.  Steve, myself and our sister in law, Tina.

The weather in Marbella was very obliging. Steve, myself and our sister in law, Tina.

 

And finally - Steve and I enjoying a boat trip.  Apparently we look like  70's rockers here :)

And finally – Steve and I enjoying a boat trip. Apparently we look like 70’s rockers here 🙂

 

 

 

 

 

 

 

 

So that seems to be  the relaxation over for another few months as we gear up for the launch of the videos.  Just to refresh your memory the subjects of the 3 videos are:

“Suicide of a family Member”

“Stillbirth”

“Rare Genetic Disorders in children – Kabuki Syndrome”

As you can imagine, all families affected by any of the above go through very traumatic experiences trying to cope with the actual event, and the ensuing ripples that always surround these very painful situations.

The videos really highlight the ins and outs of these situations and could be extremely helpful to someone who is suffering – so please, please, please, share all information you can in the lead up to the launch and during the launch, as this is really a pilot project.  Hopefully we will get a good response from this, and it will convince funders to look favourably on the project and help us financially to be able to get out there and create many more and ultimately help families in a way that would never have been possible before social media.

We have a few really good high profile individuals who are keen to support families in Trauma, including Johnny Benjamin from the channel 4 documentary “Stranger on the Bridge” and the Twitter campaign “Find Mike” after a stranger stopped him from committing suicide on a bridge; Claire Baker MSP for Mid Scotland and Fife and also Margaret Hannah, Director of Public Health in Fife.

We have been able to get in a little help with the marketing of the  initial pilot from the social enterprise “Along Came Kirsty” who are based in Dundee and have been really excellent to work with so far.  I’ll keep you updated but was keen to use a local company that has the same type of social values as our own.

As we get closer to the launch – I will try to keep you informed as to what we are up to, but meantime – please share, share, and share again – and if you have any suggestions  on how to help us – by all means – get in touch !!!!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


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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.