Post by alisonzmom on Jun 19, 2006 23:17:31 GMT -5
Just thought I'd post a bit of an update on my cuz and her boys. We got back yesterday from a quick trip to Mass for a visit and I am positively heartbroken. AJ, her 6 yr old is so very sick. He is no longer able to walk by himself and is in a wheelchair. His speech has become very difficult to understand and his hearing is really, really bad. This is a kid who last summer we joked about having "diarrhea of the mouth" because he never stopped talking!
Since May we have now learned that her youngest son, who turned 2 in January, is showing symtoms. While his MRI of his brain showed no sign of deterioration, his adrenal gland functions were horribly abnormal - even worse than AJ's are. So my cousin now is having to deal with the knowledge that two of her babies are slowly dieing. We're all very shaken by this latest turn of events. All three boys have been enrolled in a study being conducted by some docs at John Hopkins in Baltimore and will be given Lorenzo's Oil, although it is very unclear just how much this will really end up helping the two younger guys at this point.
Here's a link to an article about a woman in the UK who is facing the same situation.
www.timesonline.co.uk/article/0,,8122-2193779,00.html
I am just sick about all of it, and hate that I can't be there more for my cousin. She and I have shared a special bond for so long and now when she needs all of us the most I am just so far away.
Please continue to pray for her and her boys.
Barb
Since May we have now learned that her youngest son, who turned 2 in January, is showing symtoms. While his MRI of his brain showed no sign of deterioration, his adrenal gland functions were horribly abnormal - even worse than AJ's are. So my cousin now is having to deal with the knowledge that two of her babies are slowly dieing. We're all very shaken by this latest turn of events. All three boys have been enrolled in a study being conducted by some docs at John Hopkins in Baltimore and will be given Lorenzo's Oil, although it is very unclear just how much this will really end up helping the two younger guys at this point.
Here's a link to an article about a woman in the UK who is facing the same situation.
www.timesonline.co.uk/article/0,,8122-2193779,00.html
I am just sick about all of it, and hate that I can't be there more for my cousin. She and I have shared a special bond for so long and now when she needs all of us the most I am just so far away.
Please continue to pray for her and her boys.
Barb