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Post by laurasnowbird on Jan 25, 2007 9:47:04 GMT -5
I'm so sorry, Barb. I have wondered what was going on with this family. The depth of their sorrow is unimagineable. They will be in my prayers.
I seem to remember something about this running in families and the other boys being at risk? Are they OK?
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Post by matthewsmom97 on Jan 25, 2007 21:39:59 GMT -5
So very sorry to hear about AJ. I will most definitely pray that God gives them the strength to carry on.
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Post by Danielle on Jan 28, 2007 11:04:55 GMT -5
Our hearts are breaking for their family. We are so sorry....hugs and prayers coming their way.
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Post by SuziF on Jan 28, 2007 13:50:11 GMT -5
So sorry to hear of this Barb ! Hugs to you & your family.
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Post by alisonzmom on Jan 28, 2007 15:24:30 GMT -5
Thanks everybody for all your prayers. This has been a very difficult week to say the least!!!
I never cease to be amazed at how ignorant some people can be. AJ's Mom and Dad have been through a very ugly divorce, he was extremely abusive in most every way imaginable during their marriage. My cousin and her kids were in a shelter for over a year and half and only in the last 6 months were able to find an apartment. The father has been harrassing them all week and went so far as to physically attack the guy Jaimie has been seeing at the wake. Police were called in and the father ended up being arrested for violating his restraining order. A judge then made an exception so that he could attend the funeral the next morning but once again the police had to be involved. His family was little better and became verbally abusive to my cousin and her parents at the cemetary. You would think that in a time like this, they could just set aside all the problems to honor AJ's memory. Sooo sad. Fortunately the other two boys were not present at either occasion.
Laura, you asked how the other two boys are doing. It's a mixed situation there. William who is now 3, has developed Addison's Disease as a result of the ALD. His adrenal functions are horrible. He has a MRI of the brain done every 3 months to watch for signs that his brain is being attacked. So far there are no signs of brain damage, but when that does happen ( it is inevitable ) the only chance of survival for him is to have a bone marrow transplant. Both myself and my daughter Caitlin are good matches for him. Blake who is now 7 has shown no signs of the disease so far in either his adrenal functions or brain MRI's. Typically, boys will begin to show signs of the disease anywhere from 4 to 10 yrs of age. Both boys are being followed by a doctor at John Hopkins and are taking Lorenzo's Oil in a hope to slow down or even halt any disease progression.
My family has set up a memorial fund in AJ's name that will help with the work of the ALD Foundations effort to get screening for this disease made part of the newborn screenings done. It's sad to think that AJ's death may have been prevented if we had known at birth or shortly afterwards. Apparently some dietary modifications can help eliminate the disease. Maybe some good can come out of our pain and sorrow.
Again, thank you for all your prayers from my family and myself.
Give all those beautiful kids of yours a great big hug!!!
Barb
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