I'm sure as many as you know, getting the diagnosis of Krabbe's for Grey has not come easy. There were spinal taps, blood draws, the final blood draw that was messed up by the lab, and finally our decision to have an autopsy performed. Dr. T. said that if we ever wanted to fight for Universal Newborn Screening, we'd need a confirmation. In our hearts we knew he was right.
He called us today, with that confirmation. Part of me was relieved that the autopsy wasn't for nothing. Part of me cringed at the horrible disease that lies dormant in me. It's hard not to feel genetically mutated, that your genes were the reason for your son's demise.
Grey had Krabbe's Disease, a classical case. Dr. T. said that with that diagnosis we needed to know a couple things. First of all classical Krabbe's has an onset period between 3-6 months. That means our other sons are unaffected. We could have them tested to see if they are carriers, but they will never be affected by this disease. He also said that we needed to know that we did the best possible thing for Grey by letting him go. Krabbe's at his age is untreatable and vicious. His case was the fastest progressing that his doctor had ever seen, which really was a blessing. I would have hated for him to go through this if he were even just a year older. Remember, Krabbe's effects the body, not the mind. Grey would have had time to become more attached to all of us, and afraid of his condition. He would have known that things weren't working right. That would have broken my heart even more that it already is.
I just have to let all of you know how great Dr. T. has been through this whole thing. From the first time he saw Grey, he took ownership of him, calling him "his boy". It would have been much easier for Grey to just be a file, especially in his loss, but to Dr. T. he was so much more than that. I would have never been able to let Grey go without complete trust in his doctor, which is hard to find these days. But from the minute Dr. T. walked into the room, I knew he was the one for my Grey, even if he couldn't fix him.
Today we got a sympathy card from him, a Hallmark card that he had taken the time to pick out. Really, how many doctors would do that? In it he wrote, "We will never forget Greyson's smile, his sweetness, and his love for his family. We will never forget his parents and their love for their son." signed Dr. T. and my staff. I've read it and cried a thousand times today.
I hope he doesn't mind me sharing this with the world. I just need everyone to know what a big heart he has, and how hard he worked to save Grey. I'll always love and admire him for that. It couldn't have been easy for him either.
So, today our confirmation was two-fold; a confirmation of the disease and a confirmation of the horribly hard, but 100% accurate, choices we made together. Now I can let the doubt go and try to heal.
This day starts the next step Little Man. Someday, with hope, there will be a law in Texas to provide mandatory screening for Krabbe's. It'll be Greyson Law. It will be just one more of many gifts you have given us, and others. I love you Baby. You make me so proud.
He called us today, with that confirmation. Part of me was relieved that the autopsy wasn't for nothing. Part of me cringed at the horrible disease that lies dormant in me. It's hard not to feel genetically mutated, that your genes were the reason for your son's demise.
Grey had Krabbe's Disease, a classical case. Dr. T. said that with that diagnosis we needed to know a couple things. First of all classical Krabbe's has an onset period between 3-6 months. That means our other sons are unaffected. We could have them tested to see if they are carriers, but they will never be affected by this disease. He also said that we needed to know that we did the best possible thing for Grey by letting him go. Krabbe's at his age is untreatable and vicious. His case was the fastest progressing that his doctor had ever seen, which really was a blessing. I would have hated for him to go through this if he were even just a year older. Remember, Krabbe's effects the body, not the mind. Grey would have had time to become more attached to all of us, and afraid of his condition. He would have known that things weren't working right. That would have broken my heart even more that it already is.
I just have to let all of you know how great Dr. T. has been through this whole thing. From the first time he saw Grey, he took ownership of him, calling him "his boy". It would have been much easier for Grey to just be a file, especially in his loss, but to Dr. T. he was so much more than that. I would have never been able to let Grey go without complete trust in his doctor, which is hard to find these days. But from the minute Dr. T. walked into the room, I knew he was the one for my Grey, even if he couldn't fix him.
Today we got a sympathy card from him, a Hallmark card that he had taken the time to pick out. Really, how many doctors would do that? In it he wrote, "We will never forget Greyson's smile, his sweetness, and his love for his family. We will never forget his parents and their love for their son." signed Dr. T. and my staff. I've read it and cried a thousand times today.
I hope he doesn't mind me sharing this with the world. I just need everyone to know what a big heart he has, and how hard he worked to save Grey. I'll always love and admire him for that. It couldn't have been easy for him either.
So, today our confirmation was two-fold; a confirmation of the disease and a confirmation of the horribly hard, but 100% accurate, choices we made together. Now I can let the doubt go and try to heal.
This day starts the next step Little Man. Someday, with hope, there will be a law in Texas to provide mandatory screening for Krabbe's. It'll be Greyson Law. It will be just one more of many gifts you have given us, and others. I love you Baby. You make me so proud.
4 comments:
Watch out Austin, here we come. Grey's Law..... you will definitely be hearing those two words often.
Nicole and Family:
Here's to Grey and all of you. We will fight for your little man. We will carry his message and shout it from the rooftops! I can promise you that!
I am so thankful for all of the people who have been so wonderful to you and Bill. I am proud of my littlest nephew and miss him. We will fight, and we will fight a good fight just like Grey!
Nicole,
My name is Erik and I came across this post through a Google Alert for Universal Newborn Screening. I'm a marketing consultant from Buffalo, NY and I represent the Hunter's Hope Foundation. This foundations mission is to do research for treatment and cure of Krabbe disease as well as advocate on a national level for Universal Newborn Screening.
You may already be aware of them but if you aren't their website is huntershope.org. You may want to reach out to them. The founders lost their son to Krabbe too.
God Bless,
Erik
Nicole and family:
I just stumbled across your blog, and I wanted to send my thoughts and prayers to you and your family. Tears are streaming as I type this. Big hugs to you.
Nicole
Post a Comment