I know all of us have different beliefs BUT one thing that should be mandatory is early testing even if there’s no symptoms showing because the symptoms don’t show until it’s too late for the most part. We should ALL want that kind of health security for our children. ❤
I just want to thank you for pushing for nb screening. My youngest son is 2 weeks old and is undergoing more testing due to finding 2 Krabbe markers. I’m so thankful we live in MO now, because I never knew this could be an issue in any of my boys due to the oldest 2 being born in MI. I’m beside myself with worry for my boys, but I’m so thankful for nb screening.
I'm a Syrian mother of a Mld child and I've been through all this pain which these mothers had and now my son is 9 years old and I couldn't do anything to help him I really hope that we find any hope and science would find a solution for these poor angels ❤ my prayers for all of them
Yes, I had queries about this too. Most of the time Krabbe affects the body but not the mind, though dementia can occur. I am certain that his mother had thought of this though. It may be that he has received help in making peace with this already - these children have to learn a lot in a short time at a young age. He may have been talked to about heaven and getting healed there, which is how a lot of children find peace with illnesses like these. In which case, hearing that would not have been news to him. His mother knows him better than anybody else, and is the best person to know what is and isn't appropriate to say in front of him at the time of filming.
I didn't realize that if diagnosed early enough there was treatment available for these children.My God,why aren't all newborns tested?This makes no sense 🤬
My mother and Dad had a little girl, Holly, who had it. She died October '78, they were five months pregnant with me, I was born March '79. They almost didn't have me because they didn't want to watch another baby die.
Can Lorenzo's oil help? Did you know about Lorenzo's oil at the time? Grand misdiagnosis is a time waster. My son suffered for years before they finally pinned it down.
My understanding is that Lorenzo's Oil only helps half of the children who are started on it before symptoms manifest, meaning that you still need newborn screening. The bone marrow transplant seems like a more effective treatment. Either way, newborn screening is the key.
Is this disease a result of vaccine injury? No disrespect intended. We just watched a documentary which addressed vaccine injuries becoming more prevalent beginning in 1989, predominantly in boys.
