Our Alpha-1 Family

Sophia and Tatum were diagnosed with Alpha-1 Antitrypsin Deficiency. Sophia had a liver transplant in 12/06, and she continues to battle rejection. Tatum will need a liver transplant, and her father may be the donor. We are reaching out for support!

Thank you,
The Boyer Family

Category:

People & Blogs

Tags:

• liver
• disease
• alpha-1
• antitrypsin
• deficiency
• organ
• donation
• fundraising
• events
• sick
• children
• awareness

[TATUMANDSOPHIA]

Just hold in your heart that your baby will be well SOON!! It is the only thought that kept me together!!

Brian

[msPorta64]

I have Alpha 1 myself, lung affected. My heart goes out to you and your family. god bless you.

[Hommelsto]

My grandson wears the same diapers. Awesome!

[msPorta64]

Not sure how long ago this video was posted, keep her as healthy as possible. I have Alpha-1 MZ moderate / severe emphysema and my kids (28 and 25) are also MZ no symptoms at this time thank god. I get Aralast infusions weekly and try and stay as healthy as i can.

[becamarita1]

My son has A1AD and is currently in chronic liver failure. We are now accepting that transplant is our only option. His belly looks just like you little girls. He is 22 months old and has the most severe type- ZZ. His bowls and kidneys are now not able to function properly b/c of his liver. He is starting to swell in his face too. This breaks my heart to see babies suffer like this.

[ByronSG]

Yeah, people just don't understand. They think that because they can't see the effects on the outside, that there is nothing wrong. What they don't realize is how easily things can go downhill...

I've already had one operation and I've been in and out of hospital. I don't want to go back to that again.

[crazyPAgirl]

I know exactly what you mean.

There is this ONE man at work who smokes. I work out of a very small trailer, and he will wait for me to leave, then he lights up. The thing is, I come back a few minutes later ... he's gone, but the trailer is filled with smoke. Oh, I get SO MAD!

I warned my boss that it better STOP.

They have no idea the trouble I could bring. I don't want to - but when it comes

a total lack of respect for my health - I feel like the gloves can come off - real quick.

lol

[ByronSG]

I know what you mean. My brother smokes as well and he is still at risk despite everything.

I also get very upset when people smoke around me. I've already sustained enough damage without everyone else causing any more.

I have to remind everyone about my condition all the time, which is really annoying at times. But things are going well.

[crazyPAgirl]

he can still get sick -- that carriers can get sick too. Dummy won't listen. He's just like my mom.

Both very rude dedicated smokers -- you know the kind.

I just won't breath their air. simple as that.

[crazyPAgirl]

I am also zz. As is one of my brothers.

Our lung x-rays are pretty much identical.

Meaning, we have about the same amount of damage.

Our livers are in good shape -- which is great.

The rest of my siblings are carriers, as well as my kids.

I worry about one of my brothers.

He is the only one who smokes (besides my mom).

He seems to be in worse shape than me (or my brother with alpha).

I told him (yellled at him), he has to quit!