I have been immensely touched by your story and my heart goes out to you and your family. Besides holding Kenan in our prayers, what can we do to help? Who specially do we address in government to support you?
Laura, thank you. I appreciate your time doing so!
I have contacted my state legislators making them aware of the delay and siting the article. This is a link Hunter's Hope provides; you would need to override subject and content.
https://goo.gl/3xdgYG
You can contact the IL Department of Public Health:
IDPH Springfield Headquarters Office 525-535 West Jefferson Street Springfield, IL 62761
I am also writing the Procurement Policy Board. I am disgusted and appalled that a clerical error and registration oversight, neither of which affects the integrity of newborn screening, could cause delay in relation to human life.
Procurement Policy Board 222 South College Street, Suite 231 Springfield, IL 62704
I just saw in the Tribune that you lost Kenan. I am so sorry for your loss. I read about his story last year when I was early into my first pregnancy. I am so thankful that this testing was finally put into place, but heartbroken for the suffering of your family, especially your little boy. Thank you for sharing your story and for so bravely fighting to protect the health of our children.
I'm sorry for the loss of Kenan. I just learned about him through Neal Zundell and the column he shares on Izzy. My thoughts and prayers are with you and your family as you go through this loss of your sweet boy. Thank you for all you have done to advocate for intervention against this type of Luekodystrophy in infancy. I don't ever believe your stand and advocating has been in vain!
I have been immensely touched by your story and my heart goes out to you and your family. Besides holding Kenan in our prayers, what can we do to help? Who specially do we address in government to support you?
ReplyDeleteLaura, thank you. I appreciate your time doing so!
DeleteI have contacted my state legislators making them aware of the delay and siting the article. This is a link Hunter's Hope provides; you would need to override subject and content.
https://goo.gl/3xdgYG
You can contact the IL Department of Public Health:
IDPH Springfield Headquarters Office
525-535 West Jefferson Street
Springfield, IL 62761
I am also writing the Procurement Policy Board. I am disgusted and appalled that a clerical error and registration oversight, neither of which affects the integrity of newborn screening, could cause delay in relation to human life.
Procurement Policy Board
222 South College Street, Suite 231
Springfield, IL 62704
I just saw in the Tribune that you lost Kenan. I am so sorry for your loss. I read about his story last year when I was early into my first pregnancy. I am so thankful that this testing was finally put into place, but heartbroken for the suffering of your family, especially your little boy. Thank you for sharing your story and for so bravely fighting to protect the health of our children.
ReplyDeleteI'm sorry for the loss of Kenan. I just learned about him through Neal Zundell and the column he shares on Izzy. My thoughts and prayers are with you and your family as you go through this loss of your sweet boy.
ReplyDeleteThank you for all you have done to advocate for intervention against this type of Luekodystrophy in infancy. I don't ever believe your stand and advocating has been in vain!