NHS Organ Donation - Erin’s story - British Liver Trust

British Liver Trust

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NHS Organ Donation - Erin’s story

Richard-Allen profile image
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I saw this story over on the “Children’s Liver Disease Foundation” site this morning and thought it might be nice to share. If anything this should be a message of hope for all those suffering from anxiety and worrying about their liver condition.

Ten-year-old Erin has just celebrated her tenth transplant anniversary. Her parents Kirsten and Jamie, share her story:

“Erin was born apparently healthy but at five weeks old she began to look a little jaundiced and a blood test revealed there was something wrong with her liver. She was diagnosed with biliary atresia, a rare liver disease requiring specialist surgery.

“Erin had the surgery and recovered but we were told it would be six months before we would know if it had been completely successful. Not long after it became apparent her liver was damaged beyond repair and that she would need a liver transplant.

“During the assessment, doctors talked about survival rates to successful milestones but these seemed like impossible dreams. However, it was decided she should be listed for a liver transplant so there was at least hope. By now her condition was deteriorating.

“She was too ill to return home so we would have to wait in hospital until a liver arrived. She needed round the clock monitoring and medication, she was now miserable and suffering from the worst symptoms of liver failure.

“Thankfully the wait was short, after just days a new liver was gifted to her. The transplant was successful and we returned home some weeks later with a completely different baby.

“Since transplant Erin’s health has been excellent, she is growing up to be a compassionate, thoughtful, intelligent person with a passion for music and a lot of sarcasm. She copes very well with the medical management involved in keeping her healthy.

“This year we’ve celebrated one of those big milestones the doctors had talked about at the assessment – Erin’s 10th post-transplant anniversary. It may sound like a strange thing to celebrate, it is certainly bittersweet knowing it is a very different milestone for her donor family, however it feels like reaching this stage deserves some recognition and reflection. Recognition of Erin’s inner strength and determination and the amazing medical teams who have kept her so well for 10 years and reflection of the legacy her donor left.

“We think of her donor family often and hope they find some comfort in knowing many great things have come from their gift.”

For more on Erin’s story visit: childliverdisease.org/erins...

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Richard-Allen
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Sydgal profile image
Sydgal

Hi Richard-Allen

I have been depressed and suffered badly from Anxiety since my diagnosis of PBC in 2019 as I have two very young children, my youngest is autistic. The thought of not being around for them has been eating away in me.

What an inspiring story you posted, little Erin and her parents are so brave.

Her story has brought some courage to me . Thankyou Richard for sharing .

So very kind of you to think of others that may benefit from inspirational stories such as this. 💖

Much love from Australia 🇦🇺

What a fantastic and positive story to share. Thanks Richard.

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