Tuesday, I will have 3 minutes to speak to committee members. I will have 3 minutes to give meaning to Grey's short eleven months. This is what I have come up with. Thanks to Quinn, Slough, and McInnis for making sure it was the best that it could be. Please leave me comments on what you think. This has to be perfect.
Dear Honorable Committee Members,
I am Nicole Morris. Greyson Morris, who died from Krabbes Disease just six days shy of his 1st birthday, was my son. However, he could have easily been Greyson Kolkhorst, Greyson King, or Greyson Coleman (last names of committee members). Then it might be you, in the midst of Grey’s loss, right here, right now, having to ask for support of HB 1795, which will prevent this tragedy from happening to future Texas families.
Like me, Greyson was a teacher, his lesson costing us deeply. Through his loss, we educate others of a broken system: a system that allows treatable disorders to be ignored; a system that allows our babies to become disabled; a system that allows our babies to die.
The chances of my husband and I being recessive carriers for two totally unrelated disorders are astronomical. In working with Hunter’s Hope, a foundation that helps support families affected by Krabbes and other Leukodystrophies, we have come to learn that we are the only family known to have been affected so drastically by newborn screening. We are the only family who has had one son saved and one son lost due to newborn screening, or lack thereof.
Although newborn screening between states is inequitable, it’s inequality between brothers is much greater. When my son Seth asked me why his disorder was so much more important than his brother’s, important enough to be screened for, I stood dumbfounded. Thinking quickly, I told him that there was a time when PKU was not tested for, that there were those before him who had to sacrifice, so that he would not.
Greyson can be that sacrifice to bring about testing for more treatable disorders, if you let him.
Texans are proud people and have fought battles of all kinds. This is a must win battle we are fighting now. As an educator of special education students, I continually see the need for constant changes that will enable our children to have opportunities in life that were once dismissed. The motto, No Child Left Behind, is not just for the educational sector of society. As a mother, I am now fighting the most precious and important battle of my life, fighting hard for the rights of newborn children so that not even one of them will be left behind. I refuse to put a price on any child and Greyson is no exception. Please don't allow Grey's Gift to be left behind. We can't ignore our children.
Passing this bill can never bring my son back to me, but knowing that his loss will save the lives of other Texas babies will make the pain more bearable and give meaning to not only his life, but also his loss.
Due to ignorance, Texas’ Newborn Screening Program has cost us dearly. As parents, even as a Special Education teacher and a nurse, we were unaware of the shortcomings of this system. My hope is that you, too, were just unaware and uneducated that this system was failing the needs of our children and parents.
Consider yourself no longer unaware, no longer uneducated. Greyson has taught you as well.
Thank you.
I am Nicole Morris. Greyson Morris, who died from Krabbes Disease just six days shy of his 1st birthday, was my son. However, he could have easily been Greyson Kolkhorst, Greyson King, or Greyson Coleman (last names of committee members). Then it might be you, in the midst of Grey’s loss, right here, right now, having to ask for support of HB 1795, which will prevent this tragedy from happening to future Texas families.
Like me, Greyson was a teacher, his lesson costing us deeply. Through his loss, we educate others of a broken system: a system that allows treatable disorders to be ignored; a system that allows our babies to become disabled; a system that allows our babies to die.
The chances of my husband and I being recessive carriers for two totally unrelated disorders are astronomical. In working with Hunter’s Hope, a foundation that helps support families affected by Krabbes and other Leukodystrophies, we have come to learn that we are the only family known to have been affected so drastically by newborn screening. We are the only family who has had one son saved and one son lost due to newborn screening, or lack thereof.
Although newborn screening between states is inequitable, it’s inequality between brothers is much greater. When my son Seth asked me why his disorder was so much more important than his brother’s, important enough to be screened for, I stood dumbfounded. Thinking quickly, I told him that there was a time when PKU was not tested for, that there were those before him who had to sacrifice, so that he would not.
Greyson can be that sacrifice to bring about testing for more treatable disorders, if you let him.
Texans are proud people and have fought battles of all kinds. This is a must win battle we are fighting now. As an educator of special education students, I continually see the need for constant changes that will enable our children to have opportunities in life that were once dismissed. The motto, No Child Left Behind, is not just for the educational sector of society. As a mother, I am now fighting the most precious and important battle of my life, fighting hard for the rights of newborn children so that not even one of them will be left behind. I refuse to put a price on any child and Greyson is no exception. Please don't allow Grey's Gift to be left behind. We can't ignore our children.
Passing this bill can never bring my son back to me, but knowing that his loss will save the lives of other Texas babies will make the pain more bearable and give meaning to not only his life, but also his loss.
Due to ignorance, Texas’ Newborn Screening Program has cost us dearly. As parents, even as a Special Education teacher and a nurse, we were unaware of the shortcomings of this system. My hope is that you, too, were just unaware and uneducated that this system was failing the needs of our children and parents.
Consider yourself no longer unaware, no longer uneducated. Greyson has taught you as well.
Thank you.
3 comments:
Awesome, just awesome Nicole!! WOW! If that doesn't get them, I think their hearts are made of stone.
Beautifully written!! You're going to blow them away.
Just one thing - I think you meant the opposite of "astronomical" for the chances that the two of you are carriers, right? I think you need a synonym for really small.
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