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Manny's Updates 
Welcome to Manny's Web Page. It has been provided to keep family and friends updated on his progress.
Manny was diagnosed with (ALD) Adrenoleukodystrophy on March 31, 2003 by MRI, confirmed by blood work on April 7, 2003 at Duke University Medical Center.
We started to notice a difference in Manny in early March. He had 3 really bad headaches, and followed with his left eye drifting outward. Closer to Manny finally being diagnosed he also started having some minor hearing problems. Manny never had any health problems before. Stephen and I were really concerned, and immediately made an appointment with his pediatrician.
She was also concerned, but thought it might have been a brain tumor due to the problems that he was having with his vision. She ordered an MRI right away. The tumor was never found, but they did find some abnormalities that were rare and gave us the diagnosis of ALD. We were told it still had to be confirmed by blood work but they were pretty certain that they had made the right diagnosis.
(ALD) is a rare, inherited metabolic disorder that afflicts young boys. The sheath covering the nerve cells in the brain slowly deteriorates leaving the nerves exposed leading to progressive neurological disability and death. This means that he will have problems or loose his hearing, vision, talking, walking, memory and more.
We were then told that there is no cure, and no hope. Stephen and I turned to the internet and tried to get as much information as possible. We couldn't accept the news that was given to us. We came across the ALD Foundation and they gave us information on research therapy that was being done at Duke University. Being that we had no other options we were open to anything. We spoke to Dr. Kurtzberg that day, and one week later arrived at Duke to start the process for a Cord Blood Transplant. After an extensive work up for 2 weeks to make sure Manny was healthy enough to go through with treatment. He started treatment on April 21st. After 9 days of Chemo therapy Manny was transplanted on May 1st and is now 100% donor cells. Please follow his journey on his road to recovery.
Manny was born on October 3, 1996. He earned his wings on November 7, 2003
Journal
Saturday, December 18, 2004 5:54 PM CST Hello everyone,
I finally talked myself into updating Manny's page. I guess I really don't know where to start.
It was Manny's 1 year anniversary On November 7. And, it was his 8th Birthday on October 3rd. So, it has been really really hard getting through this holiday season. It just doesn't feel the same without my little man. We miss him so very much, and it really doesn't seem to be getting any easier as time goes on.
We are trying so hard to have peace with everything. And, I know I said I did. But, to be really honest. I don't. I think and dream of him all the time. It's still really hard to comprehend that he really is gone. I try to pray and pray to make the pain go away. To please give me a nights rest and not cry for him. I know Manny is in Heaven. But, I still wish he was here with Stephen and I and the kids. Maybe it's a selfish feeling. But, I just was not ready to let him go.
To all the families who have lost your precious child. I pray for you and your family. I'm not really sure if it's ever going to be an easy day. But, just look forward to the day that you see your little angel again in Heaven.
I hope everyone has a Merry Christmas, and a Blessed New Year!!!!!!
Manny's Mommy
Read Journal History
Hospital Information: California
Links: http://www.aldfoundation.org
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