‘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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    "We will never forget hearing the words "he might not survive.""But Loki showed us he was a true fighter.""Sometimes I feel people forget how serious his condition is, because "he is doing well" yes and showing everyone he is battling on, with the biggest smile, the cheekiness and his little ways but yet just one little thing could mean he could end up back in hospital".Shared by LHM member Emma, heart-mum to Loki here who was born with HLHS. Thank you. ... See MoreSee Less

    3 days ago  ·  

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    "We spent Jordan's 12th birthday at Blackpool Pleasure Beach, he's a real adrenaline junkie! (We did, of course, get the green light from our cardiologist first!)Jordan's first few years were rough, he spent more time in hospital than at home. He was so poorly for years and needed a wheelchair, oxygen and feeding tube for over half his life. Fast forward to now, Jordan has been stable for the last few years. Sometimes I forget he has half a heart, not because we have forgotten, but because he is living life to the full. Jordan still has challenges in life related to his heart, but we have embraced that our "normal" is different and we welcome that into our routine.We have gone from living out of suitcases hours away from home to feeling lucky and cherishing every moment whilst things are like this x."Shared by Elis, heart-mum to Jordan here, thank you. #mynormalisdifferent ... See MoreSee Less

    4 days ago  ·  

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