The Truth Behind the Headline - Danny in the Wales on Sunday | Evans-Crittens | Family Lifestyle Travel & Recipe Blog, Pembrokeshire, Wales, UK.

Sunday, 25 May 2014

The Truth Behind the Headline - Danny in the Wales on Sunday

Danny HLHS Hypoplastic left Heart Syndrome Little Hearts Matter LHM Wales on Sunday


At their recent Open Day, Little Hearts Matters asked if we would mind taking part in publicity for their charity.  We agreed to help out in our local area, as the charity have supported us so much over the years since Danny was born and we realise the importance of awareness both in terms of fundraising but also to make sure that families going through a similar experience know where they can go and get support.

Danny HLHS Hypoplastic left Heart Syndrome Little Hearts Matter LHM Wales on Sunday


A couple of weeks ago, we received the e-mail that The Wales on Sunday would like to run a piece on Danny and Little Hearts Matters.  We agreed to go ahead with the usual concerns that unless you write the piece yourself, it never quite comes across quite how you would expect.

Danny HLHS Hypoplastic left Heart Syndrome Little Hearts Matter LHM Wales on Sunday



I'm pleased to say that both the reporter, James McCarthy and the photographer, Dimitris Legakis, were very friendly, professional and polite.  I love the photos and hope we get to see the rest of them somehow.

Danny HLHS Hypoplastic left Heart Syndrome Little Hearts Matter LHM Wales on Sunday


However, I would just like the opportunity to clear some facts up which have been skewed in the piece maybe because I was unclear in the interview, because the writer interpreted information in a different way or because perhaps it made a better story in the write up.

"Danny's now joining the Wales gymnastics team"

No, he's not.  He is a member of "Welsh Disability Gymnastics" and trains with "Pembrokeshire Special Needs Gymnastics Club" (PSNGC).  

"(He) will need a transplant by the time he is 40."

The truth is, we do not know.  He may need a heart transplant in the future as his heart is working twice as hard.  

"We'll go with that one."

To be honest, I don't remember the exact words we used over eleven years ago when we told the consultants that we wished for Danny to proceed with surgery, but we took the decision very seriously which I don't feel comes across using the words above.

"With the new things that have happened in Science we are hoping all the time that the cardiologists will think of something."

Apologies to the wonderful cardiologists out there.  I do know there is far more to your jobs than you sitting there and "think(ing) of something.  I meant I hope that with more research and breakthroughs there may be more treatments available in the future.  I really appreciate all the work you do.

"We have to know how much (warfarin) to give him because otherwise his blood could thicken and he could have a stroke."

Danny's blood will not thicken.  However, he is on warfarin to thin the blood to prevent clots which could cause a stroke.  We do regular INR tests at home to ensure he is on the correct dose.

"Mumsnet Writer"

Please excuse me if I sound pedantic here but I'm Mumsnet Local Editor for the Pembrokeshire site.  I only write for Mumsnet as part of their Blogger Network so I can't afford myself the title of Mumsnet Writer (unfortunately!).  It also describes me as an "ex-teacher", which personally isn't how I would describe myself.  I am still a teacher, just one choosing to work at home as a writer  at the moment.  This career fits in more easily with being a mum of four.

In the video, I also explained how Danny had to be tube fed because he was too tired to take a bottle.  What I didn't have the time to explain was for his first six weeks I combined expressing milk with tube feeding and breast feeding.  Unfortunately, he didn't gain enough weight until he was prescribed a high energy formula.  So we eventually went on to just tube and then bottle feed him this.  Other Heart Mums have successfully managed to Breast Feed their heart babies (I salute them!) and I'm glad that I  went on to breast feed my three healthy daughters.  

Danny HLHS Hypoplastic left Heart Syndrome Little Hearts Matter LHM Wales on Sunday

I did conduct the phone interview with flu and a croaky voice, and then the photos in the garden were taken after a mad rush on the school run so I probably did not take enough time to reflect on what I was saying.

Thank you to James and Dimitri for being patient with me and for the Wales on Sunday for publishing this piece about Danny and Little Hearts Matters.

Danny HLHS Hypoplastic left Heart Syndrome Little Hearts Matter LHM Wales on Sunday

Thank you most of all to Danny, you are our star and as always, we are so proud of you (even if you're not joining the Welsh team!)!









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5 comments

  1. Laura Rocksteady25 May 2014 at 22:33

    I love this post - I think interviews always come across differently as they always have an angle they are writing from and always want things to be more dramatic than what is it, although it sounds like it doesn't detract itself from how amazing Danny is and all he has achieved and how strong you all are and I think awareness is the key and for people to be supported.


    Laura x

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  2. great post - it's good that you have somewhere to correct them! Danny sounds amazing, you're all so strong xx

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  3. Danny is amazing, great you've been able to clear up some of these points. Tom was in the paper when Wilf was little (a fluffy little story about how the knitted hat he wore had been passed down through many generations) anyway must have been a VERY slow news day as it ended up on the front page but they made SO many mistakes, calling Wilf a girl, referencing Tom's mum as his granny. The reporter called me up mortified and Tom was a bit miffed at first but it was funny looking back xx

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  4. Great article - thought the piece in the paper was good too but always good to be able to clarify points made. Sounds like Danny is doing very well and hope he continues to do so.

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  5. Its a bit wrong in places, but good piece still. X

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