My rare genetic disorder needs treatment options


Last updated 9/2/2021 at 1:27pm

Village News/Courtesy photos

Ashley Walker and her husband, Johnny, hold their twins who were born prematurely in May 2012.

Ashley Walker

Special to the Village News

I dreamed of becoming a mom from when I was a little girl. When I met my husband, Johnny, we both knew we had found our soulmate and felt ready to start a family together. We were ready for changing diapers, midnight feedings and singing lullabies for hours on end. But having children would turn our lives upside down more than anyone could predict by introducing the term "X-linked myotubular myopathy" (XLMTM) to our vocabularies.

When Johnny and I found out that I was pregnant with twin boys, we couldn't have been happier. Despite having been diagn...

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