Special Needs

Anyone familiar with Alpers' Syndrome?

I have a friend whose 2 year old has this, and her newborn had the genetic testing for it, and they found out today that she has it too. Anyone have any stories or anything they can point me to? My heart is just broken for them. The doctor gives her son under 18 years but nobody knows for the baby since they can start treating earlier.

Re: Anyone familiar with Alpers' Syndrome?

  • I just googled it...wow, that's horrible. I can't imagine what your friend is going through.

    Why did she have another child if her first child had the disease? If they did a gene testing for it, they could've done PGD to avoid having another affected child. Or they could've tested through CVS or an amnio.

    That is such a shame.?

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  • She was pregnant already by the time her son had the first seizure, shortly after his first birthday. He was perfectly healthy up until that day. They have very little money (she SAHM, he works at Walmart) and IVF w/PGD is probably way out of the realm of possibility even in the future for them. They are also quite religious, I doubt they would have terminated if they found out beforehand that the baby had the disease.


    It really is a shame, they are such good people, and their son is just deteriorating before their eyes. 

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