Hello to mammies and daddies!!

[natalie24xxxx]

I have 2 boys.. Lewis aged 4 and lil junior 10weeks who has now been told he has alpha 1 liver diesease... Like to speak to other familes going thro samething etc and what my lil boy going to be like when older...my lil junior been thro hell and breaks my heart :'('(

[ChristineB]

Hi Natalie.

I know we have spoken via FB but this is a great site to be connected to.

It really does help with other liver families just being able to listen and understand what you are going through.

Just wanted to welcome you x

[Yorkmum]

Hi

Natalie. I'd like to welcome you too. My son has congenital hepatic fibrosis and things are tough. 10 weeks old and already a little fighter eh. I don't know much about his disease but happy to support you through the emotional stuff.

Elaine Hildrick. X

[bluenat77]

Hi Natalie , just wanted to let you know we know exactly how your feeling we have Matty who is now 5 years old and other than daily medication is like a normal 5 year old ,he was diagnosed with alpha 1 at around the same time as lil junior was, it was a very very difficult time and for a time we feared the worse but all the docs and nurses at kings were great and the cldf , they are there whenever we need them, as you will have lots of questions that need answering . especially we found when taking Matty to local docs and hospitals that seem to want to give him ibuprofen all the time and can be quite persistant so having a number for a clinical nurse at kings has been very helpful so you can call on them to put local hospital straight on what he can and can't have . But as a positive it has got easier for us although its always in the back of your mind most days are just like any other .Really hope things with lil junior go as well as they have for Matty and just ask if you have anything we can help with

[zedgirl]

Hi

Just wanted to say we were in a similar position to you exactly a year ago when our almost-10 week old was diagnosed with alpha-1 over Christmas. It's absolutely terrifying and there is so much you have to come to terms with, but like others have said, it does get easier as you learn more about how the condition is likely to affect your child and what you need to know about their treatment. As bluenat77 says, you have to learn so much about this condition which regular medical practitioners don't know and sometimes that feels like you are fighting all sorts of battles. CLDF and the other parents on this board are brilliant in helping you to realise you are not alone, and that other people may have been through what you're struggling with and so may be able to give good advice and support. Fingers crossed for you and your son.

[kody2010]

Hi Natalie, I also have a little boy Kody diagnosed with alpha-1 at 8 weeks. He is now coming 3 in April!! It is a very scary and daunting time especially not knowing (I found that the worst).. Check out this link for kodys story

rvhliversupportgroup.org/st...

If you have any questions at all don't be afraid to ask,

Best wishes Megan x

[kody2010]

Hi Natalie, I also have a little boy Kody diagnosed with alpha-1 at 8 weeks. He is now coming 3 in April!! It is a very scary and daunting time especially not knowing (I found that the worst).. Check out this link for kodys story

rvhliversupportgroup.org/st...

If you have any questions at all don't be afraid to ask,

Best wishes Megan x

[natalie24xxxx]

Hey thanks for ur supoort any of u guys onfb? X

[bluenat77]

No sorry, not on fb only Twitter. Hope junior is well x

[ckjm]

Hi Natalie. My son was diagnosed with aatd at 8 weeks, having liver disease. He had special formula and as he got older he had extra calories via a powder. He is now 14 and his liver disease has been dormant for a long time - possibly due to being on the colchicine trial some years ago. He has, luckily, led a normal life - just having the usual scans and blood tests.

Hope this helps, Kate x