Rachel Benton

And he's like, you know, we did confirm some things.

You have a rare kidney disease called IgA nephropathy or IGAN.

So my first question was, you know, what do I do now?

How do I stop this?

Is there a cure?

You know, just thinking of anything like what's the next steps?

What about medication?

Blah, blah, blah.

And he's like, well...

I got off the phone and just cried, I think, for probably two days straight.

I just was overwhelmed with obviously the diagnosis and not knowing anything.

where this would take me in life, what the next, you know, 24 hours would look like a year, 10 years.

You know, how is this going to affect me in my day to day life and and my son and my husband?

I have my days where I just feel very, very guilty being a mother to him with a rare disease and not knowing in a year or 10 years, however long, how I'm going to be and how active I get to be in his life.

Every day, I just try to make the best of it though.

And, you know, whatever he wants to do, I put on a smile and try to push through.

It really scares me for my son.

I feel like I let him down, I guess.

It's not fair for him to have a mom that is going to be sick for the rest of her life.

It might not be bad today, but we don't know about tomorrow.