Greyson Morris Made The News!

One huge leap has just been accomplished in our fight against Krabbe Disease.  Today our local paper had a great article about Greyson and his family, read it here.  And then tonight, Greyson's parents were featured on News 4 WOAI here in San Antonio.  Today was a huge day!  The word is out, and Greyson continues to touch lives. The number of individuals that now know about Krabbe Disease has multiplied, here in our area. See the following link here for the story and video!

Greyson Morris Benefit

Please visit the link for information on an upcoming benefit for the family of Greyson Morris. 

http://www.greysgift.com/Greys_Gift/Benefit_Event.html

For information on this precious angel and the courageous battle he fought with such a horrible disease, see my previous post titled Life is short.

www.greysgift.com

There is now a dedicated site for Greyson Morris. Nicole's brother in California has set it up. He did a wonderful job. There is even a resources page that is great. There is also a slideshow that is amazing. Please take a minute and check it out. Please, please, please pass on the website. Awareness is the only way we are going to have a chance at improving newborn screening standards.

www.greysgift.com

Saying Goodbye.... For Now.....

Tomorrow is Greyson Morris' memorial service.  My heart hurts, thinking about his family.  We celebrate his life.  We grieve with his family.  We shed tears for what might have been.  We shed tears of anger.  Anger at such a horrible disease.  Anger that it is not screened for in our state. But we have hope.  Hope for the future of newborn screening.   

This precious boy has touched so very many.  He will continue to touch so very many from heaven.   

We will fight for Grey.  We will join the forces.  We will become soldiers raging a war against Krabbes disease.  We will fight to get newborn screening required for fatal diseases.  We will not quit, we will fight until the end, until victory, just as Grey did.    

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?

I've been quiet lately.... I know....

It has been a few days since I have blogged.  That is very unlike me, I know.  Honestly, I haven't been up to it.  I will be back to blogging, soon enough.  It just seems so.... I don't know what the words are....  but when I look at what Nicole is going through.....  I just can't.....  I did want to post though and thank every one of you for your prayers and emails and for sending gift cards.  Please continue to pass on my post about Grey being diagnosed with Krabbe's Disease and the need for awareness.  The post is Life is short... please take a minute and pass it on.  I added some pictures of this sweet little guy on that post. 

Life is short....

I want you to meet someone.  Her name is Nicole.  Not only is she a coworker of mine, who teaches across the hall from me, she is my friend.  When I got pregnant with Bailee, she shared with me her desire to give it one more shot, and try for a girl.  She already had three boys.  I told her she was nuts to already have three and consider even a fourth!  I could barely handle one. Well, about 3 1/2 months later..... she was pregnant.  It was great because we experienced pregnancy together for a few short months.  In December of 2007 little Greyson Morris was born. Oh, is he a cutie!  Yes, she was blessed with another boy.  A boy that would end up touching lives in ways only God knew at that point.....

Around the time that he was 6 months.....  Nicole started to become concerned because Greyson began losing some of the milestones he had achieved.  The doctors were also concerned and before they knew it..... all kinds of tests were being done.  From MRI's, CAT scans, spinal taps, blood work... you name it, he had it done.  MRI tests revealed a deterioration in white matter of the brain.  

Last week, they received the news.  Greyson has Krabbe's Disease.  It is not common.  1 in 100,000 children are born with it.  It is fatal.  The average expectancy is just short of two years old, for those that are diagnosed with infantile onset.  Greyson is deteriorating rapidly and they have given him 1-3 months to live.  The worst part.....  there is newborn screening for Krabbe's Disease.  And if caught early, the survival rate is good with cord blood transplant. Many infants have been saved with the transplant.  The disease affects the myelin sheath of the nervous system, which is the protective coating of nerves.  It causes severe deterioration of motor skills. At this point....  when Nicole brings him up to school for a visit.... he still gives you that oh so precious grin....  

Currently New York is the only state that requires Krabbe's Disease screening to be part of the newborn screening. Texas only screens for 29 out of 55 diseases!  The only reason New York now requires it, is because of Jim Kelly, a Pro Football Hall of Fame Member and former Buffalo Bills Quarterback.  His son Hunter fought a brave battle against this horrible disease. Please visit www.huntershope.org for the story on Hunter Kelly.  Also, www.krabbes.com is a great site.  

When the call from the doctor came with the diagnosis, it was Bill, Nicole's husband who received it.  He was told the news.  Because they had planned family portraits to be done the following day, he decided he would not tell his wife until after the portraits.  He knew that if he told her, she would not have gone through with the family portraits.  I commend Bill for that. They did take the family portraits and they turned out absolutely beautiful.  Nicole and I discussed today what an absolute treasure those photographs will be....  

Nicole's strength is amazing.  After seeing the portraits I could not stop bawling....  she cried right along with me.  I just can't fathom the pain that she is dealing with.  Knowing that you literally only have days left with your child.  Her strength comes from knowing that something good will come out of this and that Greyson will touch so many lives during his short time with us and continue to once in heaven.  She says it is so hard to watch him get frustrated because he can't move....  he wants to play around with his brothers and can't.    

I am joining them in their fight to make Krabbe's Disease a part of the required newborn screening.  No parent should have to endure the death of a child when it could have been caught and successfully treated as a newborn.  

Hospice is being called in.  They will help Greyson to be as comfortable as possible.  At this point, most nights he stays up all night screaming.  Hopefully they can provide him the comfort he needs.

I have a request......  I know we all are struggling financially....  trust me I know.  BUT, if at all possible I would like to collect Wal-Mart gift cards for the family or any other gift cards for that matter.  This way, they will be able to get gifts for the kids and get food for themselves and have a GREAT Christmas.....  any tiny bit counts....  if you are able to help, please email me at dunlap9499@gvtc.com or visit our school website at www.comalisd.org/District_Web_Site/ChMS/ChMS_Main.asp for our school mailing address. Please don't mention my name or this blog.  Also, please forward this post on to others....  the more the merrier.  I know I am being bold in asking this but this is an opportunity for us to pay it forward.  Also, please pray for the family and tonight as you put your kids to bed..... hold them a little longer..  give them that extra kiss.  Life is precious and so very short.