A little bit of hope

Speaking from experience, having been diagnosed with Biliary Atresia at 8 weeks of age, growing up attending countless hospital visits and having countless 'what ifs' and uncertainties running through your mind I just wanted to out my experience out there and give at least a little hope to those who need it that there is always light the end of the tunnel.

I'm 23 now and to anyone I know, I appear to be just as fit and healthy as any of them. As I was growing up I always questioned whether I would have the same opportunities as my brother, be able to reduce my visits to the hospital or even be able to plan for the future which is what I'm sure a lot you and your children think at times.

Now, as a 23 year old me I can confidently say I have had an abundance of opportunities which allowed me to complete my A Levels, go on to be a retail store manager at 20 and now even done a U-turn back to the hospital environment to manage an Outpatient department in my home area. I believe my drive and determination has all stemmed from my diagnosis and if harnessed properly, there are no reasons whatsoever that any child diagnosed with Biliary Atresia could not exceed their objectives both health wise and in their personal lives.

Anyway, I hope that reading this will help to give a little bit of hope and comfort to a none going through what myself and my parents went through when I was so much younger as I know this would have helped us so much at times.

Josh

6 Replies

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  • Thank you so much for sharing this. Very inspiring!

  • Thanks for sharing Josh. Glad to hear life is treating you well.

    Our 12year old has BA but like you lives life to the full and takes all opportunities thrown her way. I feel her BA experience has made her tough and she takes no nonsense especially from medics!!

  • Thank you so much Josh for sharing this with parents and children who are going through it right now. You are an inspiration to them all. Jacquie :-)

  • Thank you for sharing!!

  • Wow! That’s great to hear Josh. My son will be 18 next month and has BA. He was doing so well after the age of 2, but last week had a bout of cholangitis. I’m so worried about him as a mom. One of the docs in the hospital said, oh! He will end up having a liver transplant! All of our BA patients do. Tears filled my eyes! He is such a strong will young man. This can’t be who she is talking about. 6’ 140# a senior who co-ops, does dual college and his senior year, and plays football. I was so angry at her. She has the wrong person!

  • My parents and I have also always been told that a liver transplant is inevitable with BA patients but like you this angers me to generalise in such a way as it's really not the case. I've spoken to many older adults with BA who have not had a transplant and so I just know for me, it's about staying as healthy as possible and remaining positive about the future whilst remembering that in a sense doctors will always be there to prepare us for the worst case. If only the doctors realised what it does to parents and young people when they are subject to such sweeping statements then it might help them to realise it's not always helpful.. I'm sure your son will be fine and as I always think, if the time did ever come for a transplant, it's just another excuse to show how strong we can be and pull through yet again!

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