Posts Tagged ‘Krabbe’s Disease’

Greyson’s Law Finally On Its Way

June 1, 2009

YEAH!  After a scare on Friday, May 29th, Greyson’s Law is finally out of the Senate and headed to Governor Rick Perry’s desk.  Along the way, it almost died with the addition of the CHIP funding bill but has been stripped of the last minute add-ons and, God willing, will get signed.  Please, Governor Perry, do the right thing and sign this bill.  

I’m still fuming over the way our Governor callously dismissed the health care needs of thousands of poor children with the CHIP mess.  A recession is not the time to tell poor, working class families that they’ll just have to suck it up and not get medical care for their sick kids.  In this instance, that funding was going to get tacked on to Greyson’s Law and derail the whole thing.  Why can’t our lawmakers just do the right thing for kids in the first place?  Take some of that oil revenue surplus and fund CHIPS properly.   If Greyson’s Law has taught us anything, it’s that up-front preventitive care or screening is more cost effective.  We’ll all be sucking it up to pay for families denied access to CHIP  rolls  now when they have to make a more costly visit to the ER for the kind of care the budget makers denied their children.

More on Greyson’s Law when it gets signed.  In the meantime, here’s the link to Governor Perry’s contacts page.  It’s easy to let him know how you feel about the passage of Greyson’s Law.

Good From Sadness

January 14, 2009

On December 12, 2008, the grandson/nephew of one of our large extended parish families passed away from a rare, but always fatal degenerative neurological disease called Krabbe’s Disease.  Greyson was a beautiful 10-month old who gave his family a lifetime of  smiles and joy to remember him by.

The ironic fact about Greyson’s illness is that if it had been detected sooner, he could have received treatment to extend his life and ease his symptoms.  Particularly with ongoing research that shows cord-blood transplants given before symptoms appear might have had the greatest potential to give him several more years of life.    Krabbe’s Disease appears in about 1 in 100,000 children (in Arab populations it is more prevalent at 1 in 6,000).  Texas currently screens for 27 disorders, ranging from Tyrosinemia Type I (1 in 100,000), Sickle Cell Disease (1 in 2,500) to Homocystinuria (1 in 350,000).   I realize it’s impossible to screen for everything, but Krabbe’s is not on the list for state-mandated screening.  I don’t know the process for getting a disease listed, but in my mind if it is something that could have given Greyson and so many other children a  little more time to be with their families, what is the stumbling block?  If you say the words “money” and “cost-benefit”, that’s going to ring very hollow for grieving parents who would pay anything for just another day with their children. In fact, I believe if you were to ask expectant parents whether they wanted to have this additional testing or not, you wouldn’t find one parent who’d say, “nah, I’m sure everything’s fine – we’ve weighed the odds and it just isn’t worth it”. 

New parents think everything is wrong with their babies.  Every sneeze or fever, every rash, produces panic.   They obsess over every developmental milestone that isn’t achieved to the day.  And thank God, most of the time it’s worry for nothing, but what if you are that 1 in 100,000 parent?  Think it won’t happen to your child?  Well, that one child is someone’s baby and they are hurting and frustrated and questioning what more they could have done.    That is why Universal Newborn Screening is needed now.

Greyson’s parents, Bill and Nicole, and his extended family have been an example of what joyful Christian mourning  can be.  There is no joy in the death of a child, but we have a loving God who has given us the gift of eternal life that can turn grief into joy and hope.   And the really amazing thing about humans is that we most often find a way to make some good come out of such a tragic situation.  I don’t think this is just an evolutionary, psychological coping mechanism, but a real reflection of what it means to be created in the image and likeness of God.   We have been gifted with the best qualities of God – his mercy, love, altruism, charity, empathy –  and like our Lord and Saviour, we can and do choose to use them even during the most difficult times.  

If you want to understand the true emotional cost of Krabbe’s Disease and what mandatory newborn screening could have prevented, I encourage everyone to visit Nicole Morris’ beautiful blog at Grey’s Gift or you can look her up at her new page on Facebook.   Nicole is pushing for Universal Newborn Screening and would like something good to come from this tragedy.

How can you help?  A benefit lunch and silent auction are planned for this weekend, Saturday, January 17th from 11 am to 1 pm  at the New Braunfels Church of Christ, 1665 South Business 35, to help defray Greyson’s medical and funeral expenses, and to support medical research for Krabbe’s Disease.  A memorial fund has been set up at Bank of America and direct donations can be made at any branch nationwide to:  Greyson W. Morris Memorial Fund

And most importantly, contact your state representatives, and your Congressional representatives.  Click here  for examples of letters you can send, and while you’re writing them, take a look at beautiful Baby Greyson – this isn’t  just about a disease, it’s about someone’s child.

Update:  The Herald Zeitung paper in New Braunfels ran a very nice story on January 15th about Greyson and the benefit.   The benefit was a great success by the way – a sizeable fund was raised from the silent auction, but more importantly, there are thousands of people who now know about Krabbe’s Disease.