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Adrenoleukodystrophy (ALD) Online Support Group

Early diagnosis of X-ALD/ successful treatment?


#1

Hi our two year old son has recently been diagnosed with X-ALD as a result of genetic testing and the knowledge that I am a carrier. He is currently asymptomatic and will just be monitored going forward from this point. We are hoping that with this early knowledge we will be able to avoid a severe progression (if it results in cerebral ALD), before attempting treatment. With another child on the way we will be collecting the cord blood at birth to store for future treatment of our son if required. I just wanted to now if anyone else had a story of early diagnosis/ successful treatment through BMT or cord blood with their son?


#2

LittlemanBJ, I see a lot of members viewed this discussion without responding. The leads me to conclude that perhaps no one has collected cord blood before for diagnosis/treatment. Early diagnosis is a huge plus, and I hope will be very helpful to your son. Keep posting any other questions that you have. Also, sharing your experiences as you go may help other parents who join up later. Best wishes to you son!


#3

I was pregnant when I found out our 4 year old had has ALD. We collected the babies cord blood. We did it through CBR and they banked it for free since we already had a child that might need it. I know VIA cord and several other banks have the same program. You have to get doctors to fill out a form but it's pretty simple. Sadly our baby was not a match for our four year old.