Alpha 1 ATD

Hi, My name is Christine, my son Reece was born with Alpha 1 ATD. He was diagnosed at the age of 7 weeks. He was very poorly but against all the odds he is doing fantasically well, he will be 16 in December !!!

He spent a few days away on the CTTE CLDF residential trip in July which he loved.

He met up with loads of kids of all ages with different types of liver disease, he had a great time.

Reece has just gone into his final year of secondary school.

We will be attending the CLDF conference on the 6th October, be nice to meet up with any other rmums and dads who will be attending.

11 Replies

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  • Hi Christine, sorry to hear about your son but glad he is doing well now. My son Ben (3) has just been diognosed with Alpha 1 and he is ok in himself but is on alot of meds and ends up with lots of infections winter time, myself and husband are both carriers MZ, and currently waiting on results for my 1 year old.

    We are attending the conference in October so hope to meet you there

    Take Care Cathy

  • Hi Christine and Cathy

    My son Freddie who's 6 now was diagnosed with A1ATD at about 10 weeks. In March of this year he had a liver transplant and the change in him has been amazing, he's doing really well. I'll be at the conference in October so hope to meet you both there.

    Lisa

  • Hello ladies

    Both Reece and I will be at the conference in a couple of weeks, it will be great to meet you. Another mum (Sarah) will be going with her son Leigh who is 15 and also has Alpha 1 will be going, so someone else for you to meet.

    Christine x

  • Hi, my husband and I will be at the conference too. Really looking forward to meeting other parents of A1ATD kids.

  • Hi Kath! I've just read another message you've left and thought it was you! Can't believe both our boys had transplants in March! It'll be really great to see you and have a catch up at the conference! See you tomorrow. x

  • hi i've finally joined Christine!! my oldest son Leigh has Alpha-one he's 16 ina few days I was at the conference and the stem cells research was interesting about them in the future being able to change a Z to a M gene I couldn't help myself and had to ask if that meant in the future could they turn a ZZ into a MM! Sarah

  • Well hello Sarah !!!!

    About time we saw you on here lol

    Yes it was great to catch up at the conference and alot of info to take in.

    Seems like the boys had a great time at Drayton Manor.

  • Thank you to you all for sharing your stories. Our son Matthew, is 5 and despite being told to prepare ourselves for the worst when he was first diagnosed at 4 months he is a normal, hyper 5 yr old, apart from his meds. He suffers with his tonsils, nit sure if related and not great at putting on weight, but we are now at 2 yearly appts at Kings. I do worry about the transplant situation and the never knowing when/if it's gonna happen, will he suddenly become ill/jaundiced so is interesting to read your experiences are at varied ages. Unfortunately we haven't made it to any conferences yet but hope to this year. Good health wishes to all

    Natalie xxx

  • Hi Ladies. Really wish I could have made it to the conference. My son John has Alpha 1 too. He was diagnosed at 7 weeks and is now 14. He has been really really healthy for the last few years, leading a totally nomal life, but i still worry about the possibility of transplant. Especially as he is now being a complete idiot and is smoking and stole a bottle of whiskey Fri night and got completely wrecked! Luckily one of his 'friends' rang us. I say 'friends' as John is also ADHD (dont know if linked to Alpha 1) and I seriously wonder whether he attracts these kids as he acts the clown so much. Sounds like I missed some really interesting stuff in the stem cell talk. Does turning a Z into an M means that you could become a carrier instead? Even that would be better than nothing!

    Christine - did you have trouble with Reece doing the 'I know everything' rebellion thing? I'd be really glad to hear. Thanks, Kate

  • Hi Kate

    Thankfully Reece is soooo anti smoking and drinking that I do not have to worry !!!!!!

    He is an angel compared to some teenagers the same age, he does have his moments but we have not had anything major to deal with (fingers crossed it stays that way).

    I have noticed that he wants to be more independant with certain things but equally he likes the secrity of mum and dad.

    I guess for the moment we are lucky with him and long may it continue !!!

    Sorry to hear about Johns antics at the weekend I can only imagine what you are feeling !!!!! I would be mortified if that was Reece.

    As far as I am aware ADHD is not connected to Alpha 1, I have heard it is hereditary with men.

    Hope he settles down soon, here if you ever need to shout, scream or rant x

  • Hi all,

    I have two son's with alpha 1 one is 7 and the other is 2, just wanted to know if all those who have had transplants if they get sick really quickly or is it gradual. I am worried we might miss when there is something wrong. How were they growing up, did they have lots of problems?

    Lisa

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