Dalton's Dream Update!!

First...no big updates still on Dad, his counts are low again and they doctors are concerned b/c they aren't sure why, but he's just biding his time, trying to gain weight and waiting for the pet scan to hopefully come soon!

Second...you guys remember my friend Heidi and her son Dalton who passed away last month from Krabbe's Disease? (previous posts). Well, I am SO proud of her, I can barely type. She is working on legislation to try to get more children's diseases added newborn testing, specifically Krabbe's. Check out this article from the Tyler paper, and again, can I just say how PROUD I am of her. She's always been the little sister to me because she was Lori's little sister (and I guess I adopted her as mine cuz I just had a stinky brother!), but man has she so surpassed that title now :)

http://www.tylerpaper.com/article/20090329/NEWS08/903290327

This is the e-mail she has sent so you can all help support the work being done:


As many of you know, Dalton went to be with Jesus February 25, 2009. He was 10 months and 30 days old when he died. In his memory, please pass this e-mail to everyone you know that lives in Texas.


For those of you that do not know me, because I do expect everyone I send this to to pass it on to everyone on there list, my name is Heidi Gibson. My husband and I have 2 sweet boys. One is still living and the other is in heaven. Our littlest angel was diagnosed with a dreadful and terminal disease called Krabbe's disease. It currently isn't on the newborn screening done in Texas, but I am sending you all a link to the Hunter's Hope website and to the greysgift website. Please take a few minutes out of your busy day to write or e-mail your senators and congressmen to let them know that we will not stand for our children to be put in jeopardy any longer. This website already has templates to help you write that letter or e-mail. This disease if it is tested for at birth is treatable. But like most Krabbe's children, Dalton had to suffer a horrible death that a heel stick could have prevented. That is what makes it so important for us to group together to fight for our kids.

For those of you who knew Dalton, he is worth your time. Actually every child born with Kabbe's is worth the time it will take you to write your senator and congressmen. He was absolutely beautiful. He had dark hair and the most spectacular blue eyes you have ever seen. He is our angel. He has a big brother named Aaron. Dalton was diagnosed with Krabbe's when he was 5 1/2 months old. It is a genetic neurologic disease that affected Dalton's brain. Krabbe's kids can live up to 2 years, but most only live to be 10 1/2 - 13 months old. It is unfair to the children that this disease is out there. If detected immediately after birth it can be treated. However without it on the newborn screen it will never be diagnosised until it is to late for treatment.

Please please..... I am begging that you take a few minutes and let our politicians know that we will stand up for our children. I am also attaching a website, that is unfinished because of me, that has pictures of Dalton. I want everyone to know who they are helping. Please pray for our family. We also have started a fund in Dalton's honor, called Dalton's Dream. It is his dream that no child suffer like he has had to suffer and that all children have equal rights of testing for this and many other terrible diseases. The other website attached, greys gift, is a website dedicated to another Krabbe's kid who passed away in December. The bill that we are fighting for is named in his honor, Greyson's Law HB 1795. This is the bill that is in th House of Reps. The link below is for the same bill that is in the Senate.
http://www.senate.state.tx.us/75r/senate/commit/c610/c610.htm


Grey's bill in the senate was put to committee today. The above link seems to be the most direct way to contact the members of the Senate Committee on Health and Human Services. When you write them to support Greyson's Law, please make sure to put the senate bill number in the subject box, SB 1720.

If you would like to contact me, my home number is (903)984-5305 and my cell number is (903) 812-0577. Thank you for taking time out to help us.

Thank you in advance,
Heidi
www.huntershope.org/unbs/takeactionnow
www.greysgift.com
www.daltonsdream.com


Third...later today or tomorrow I will get Project 365 weeks 12 & 13 up and catch up on a few recipes!