Tuesday, October 4, 2011

If your baby tastes of salt he is not long for this world.

Its an old Irish saying.  When Jack's first sweat test ( a test to diagnose Cystic Fibrosis) came back borderline I hit the internet.  This Irish saying just stuck with me.

Jack at seven months old had a cold that would not quit, horrible reflux issues had not slept since the night he was circumsized.  Finally we had a possible answer.  Cystic Fibrosis.  But I did not like this answer and went to the internet to prove they had no idea what they were talking about.  Not my beautiful boy.

"If your child tastes of salt he is not long for this world."

That night after everyone was asleep,  his older sister all tucked in, I sat with jack nursing him and rocking him, I licked his forehead.  I did it again just to make sure. It was salty.  He tasted like salt.  The tears rolled down my cheek as I rocked Jack to sleep that night.  And for so many nights to come.

I have not thought about that much till tonight.   I went to New York City to a gathering of Doctors, Families, Children and Drug companies to hear the latest about Cystic Fibrosis.  There was a new drug, a little blue bill from a company called Vertex.  This drug did not address the symptoms of Cystic Fibrosis.  It stopped the disease.  CF is a progress disease, once it gets some traction, you can deteriorate at an alarming rate.  It is a fatal disease, there is no cure.  Could this be the call I have been hoping for?

The drugs are gene specific now so for some, the news is very encouraging. Not for me,  no good news yet.  So I listened to a Doctor tell me the good news for other mothers.  I listened to the father making an passionate plea for $50,000.  And then there was Emily. Beautiful Emily twenty something, CFer.  She was there to talk about how she participated in the trial (she had the right gene) and how effective the drug is.  I listened while she talked about feeling better.  She was able to breathe, able to go for long walks, workout without losing her breath.  Her lung function was improving.  Unheard of.  Then she said after completing numerous test (all positive) for her doctors, she did her own CF test.  She  licked her arm when no one was looking, for the first time in her life, she said she did not taste of salt.  Thats when I started crying.

For the first time since this journey began. I truly have hope for all the mothers there waiting for their call or waiting for that moment when no one is looking, that they can lick there child's forehead and not taste salt.

1 comment:

Tre' Latta said...

Hello. I saw your name on one of the CF sites. I am a single mother of five kiddos. Two with CF. My oldest son, Blake, is 17 and diagnosed Delta F508 as a newborn. My 14 year old son, Vance, is a carrier. My son, Kaden, is 12 and he's gene free. Kylie is 9, and she is
also a Delta F508 kiddo. Eleri is my 7 year old daughter, who is a carrier. I'd love to talk to you more. I've not reached out to the CF communities much. Feeling it's time. Need some ideas, help and support. Realizing my friends don't quite get it. Felt an instant connection reading what you've posted. Hope to chat with you sometime soon. Terri (Sabotka) Latta. I am on Facebook. Please look me up, if you have time to share. So nice to hear things I've thought over the years. Thanks oodles for taking the brave leap to write. Appreciate it much already. :) ~ Terri