Greyson's Law HB 1795

Today, Nicole came into my classroom with papers in her hand.  She handed them to me and it took everything I had not to crumble into a heap of tears. What she handed me was a copy of the House Bill for Greyson's Law.  I couldn't believe that it was right in front of me in black and white.  

I picture Greyson doing a little dance up in heaven.  Oh, I just know he is so very proud.  Thank you Greyson Morris!  You are changing the world!

We are one GIANT step closer!  Soon all babies born in Texas will be screened for Krabbe Disease!  

Follow this link to view the bill. 

Follow this link to contact the committee members we need to support the bill.  Please include the HB number in your email.  

We need your support!  Please help us save other children!

Contacting Austin

There has been a lot of contact made with lawmakers and lobbyists in Austin.  They are in session and now is the time to get things moving on improving newborn screening in our state.  I spoke with Bill, Greyson's dad, about it a little this past week.  It turns out that the funds are just not there to support the cause.  While the support to pass these new requirements is there as far as yay, or neigh.

Money talks.  Money makes the world go round.  Apparently, money is what it is going to take to improve newborn screening, and lots of it.  It looks like the funds will have to come from "big" people with "big" money.  The funds aren't there on the state level.  So..... newborns will continue to be born here in Texas without being screened for 16 additional diseases.  

I met someone since starting the blog.  Her name is Carrie.  Her daughter Hannah is fighting for her life and has been diagnosed with Gaucher's Disease.  They live her in Texas also.  You can read her blog here.  Hannah is having to have extensive therapies, transfusions of different sorts, and tons of other things.  Her family doesn't qualify for assistance with the medical expenses.  Like most of us, they are not wealthy.  They are your average Americans who have worked hard all their lives.  A particular treatment Hannah will begin in a week or so, costs approx.  $30,000/yr. for infants and up to $250,000.00/yr. as an adult.  Where is the fairness in all of this?  Also, insurance has lifetime maximums.  Hannah will be meeting her maximum quickly.  What happens then?   

I don't get it.  I don't understand how price tags can be put on lives!  I think the biggest thing that amazes me... I have gone my entire life unaware of this nonsense.  My naivety was an understatement.  Becoming aware of all this craziness is so very scary.  My ideas of the world are ever so gradually changing as I see what is happening.  

So rare.... yeah right.

A storm of emotions are brewing inside of me.  Anger, frustration, disbelief, deep sadness..... are what I am feeling tonight.

Today I found out that precious little Zoe from Arizona, passed away just after midnight, from Krabbe Disease.  Then I found out about another little girl in Arkansas who just turned 1. Harlee was diagnosed with Krabbe on December 15th.  

I don't understand it.  Why in the heck do these precious babies keep having to die.  Why in the heck can't ALL 50 states test for ALL diseases.  The capability is there.  

I am outraged.  I can't comprehend it.  I can't wrap my mind around it.

Go ahead, research Krabbe Disease on Google.  The thing you will see most often is how freaking rare this disease is.  REALLY?  Go tell that to Judson's mom, Greyson's mom, Zoe's mom, Harlee's mom, and the hundreds of other mothers out there who has or had a child diagnosed with Krabbe Disease.  Yeah, it is extremely rare..... 

I sit here, tears rolling down my face, rolling my eyes, in disbelief.  How could such a cruel disease be allowed to continue to attack our precious children?  

This is why we will continue to fight.

The Love of Humanity.

Our capacity of love, is amazing. As human beings, we band together and support each other when it is needed. While I wish tough times would not fall on any of us..... they do. It is the support and love of others though, that will see us through.

Through Greyson's death, I continue to be amazed at the out pouring of love from all, including complete strangers. The fundraiser yesterday was another reminder of how many people Grey continues to touch. It was a huge success! It was amazing to see the amount of people there. It was awesome! When I think about all the people that pulled together to pull of this fundraiser..... my heart smiles.

There was a woman from San Antonio there with her two kids. She is a follower of Nicole's blog. To know, that she felt compelled to be there, is incredible. During the event, I found myself taking a step back and watching the crowd. There weren't words to describe the feelings I had.

I know the word is spreading, I know we will improve newborn screening here in Texas. I had proof of that yesterday. After the fundraiser, Brayden's friend Riley, who is also one of Grey's older brother's, came home with us. I needed to run to Kohls to get a picture frame, needless to say.... the two boys were not thrilled at all, and both made sure to let me know that they did not like Kohls.

As we were in line to check out, they started talking to a lady waiting behind us. They went on and on about how they are in the same class, and that they were spending the night together and were so excited about it. Out of nowhere, Riley says, I lost my brother, but he is in a better place. Tears immediately came to my eyes. You can only imagine the look on her face also. I turned to her, and briefly said...... (the lobbyist was coming out in me) yes, he did, Grey was 11 months old and died of Krabbe Disease. Can you believe..... it could have been screened for and very likely treated, but Texas does not screen for it! The lady's face immediately lit up and she said..... Oh, my goodness, I heard about his family, and saw them on the news! That is horrible, and we have to change screening here in Texas!

There you have it....... proof our message is spreading......

Researching Krabbes

I have spent the past few days researching Krabbes Disease on the Internet.  There is little statistical data out there that I could find.  There is a higher prevalence in certain countries. But as far as U.S. data, it just isn't found.  

There are many questions that I have, such as:

I want to know prevalence in the U.S.  Reasons why it isn't screened for in most states.  How many children are currently fighting Krabbes?  What are the reasons that Krabbes isn't currently screened?  I hope and pray the answer isn't because it is such a rare disease or that it is related to cost.  To little Greyson and his family, it isn't rare.  It is a horrible reality.  

I did find that Illinois will soon join New York as a state where Krabbes is a newborn screening. How many other states are in this process?  What is the protocol for contacting lawmakers?  I did find information on a bill, the Newborn Screening Saves Lives Act of 2007.  It is suppose to be on the President's desk for a signature in the near future.  From what I found..... it has been put on hold.... why?  Why the heck isn't a 2007 bill a law by 2009?  My hope, is that it will be.

In her most recent post titled Seth, Nicole talks about Seth having PKU.  He had a question..... why is it that his condition was more important than his brothers.....  I would love to have him ask that question to lawmakers.  I want those in charge of passing these laws to answer him directly.  Not another parent should go through this.  Would it be a different story if a powerful lawmaker was going through having a child with Krabbes?