‘I Can’t Make It (Luke’s Heart) Normal’- Joanne, Martin, Ethan, and Luke

Luke’s family reflect together on their experiences of having a loved one with a congenital heart condition. After the anomaly scan revealed that Luke would have half a heart among other conditions, Joanne and Martin spent days at home under a dark cloud and in tears.  But they found support in friends, family and Little Hearts Matter.  Luke’s mother Joanne recalls the fear of taking her son into surgery, of course preferring to spend time at home. This is a struggle many parents of children with congenital heart conditions to go through and Joanne does admit that accepting it took several years.

When Luke was in hospital, his brother Ethan describes the sadness at watching his brother crying, but also learnt to appreciate the time he could spend with his brother.

When Luke was in hospital it was weird. I would not be able to wake up and see him.

When Luke awoke in hospital, Ethan was able to cherish the moments he got with him, whether it was playing video games or watching a film.

Luke and his father have also written about their experiences. To read more Luke and his family’s story, check out our Newsletter.

Luke’s father Martin is also a brilliant artist, and documented Luke’s time in hospital through his sketchbook. You can see a couple of them below:

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    The Youth Zone is our dedicated support network for young adults aged 11 to 17 living with a single ventricle heart condition. During lock-down, we have been working hard to keep our youth members supported and connected with each other.

    We just wanted to shine some light on this awesome bunch, as they have come so far and achieved so much during the Covid Crisis. One of our highlights being this video, a 26 minute exercise challenge via Zoom, all in support of LHM for the 2.6 challenge. They smashed the routine and raised over £500 for us! Thank you.

    The group keeps in touch through regular Netflix parties and lots of healthy discussion on the private message forums, as well as having access to 1-1 support provided by LHM whenever they need it.

    None of this would be possible without our youth leader Lexie and our awesome youth mentors, please can we all thank them for the incredible work they have been doing for these brave young people throughout this crisis.

    Visit the youth zone here lhm.org.uk/youth-zone/
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    2 hours ago  ·  

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    Open Heart Surgery during Lock-down | LHM parent member Rose shares some uplifting words for us.

    "We were very apprehensive about this surgery as the last one he had was a very long recovery. He literally has made so many people proud, Naayt had his open heart surgery on the 11th June and was discharged 11 days later... home! yes, home!"

    "I couldn't believe it either. You will be so amazed at how pink they are after this surgery and its so lovely to see. The only thing that stops them is the drains which he had 1 left in literally 3 days before discharge and his inr being in range which happened on the day he was allowed home."

    "These kids are so amazing and I am so amazed at how fast they can recover and get through these operations."

    Half a Heart, Not Half a Life x
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    18 hours ago  ·  

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